Chris Hill's fight against Multiple Myeloma

If you would like to help by making a donation
please use the Donate button below
or email us for
physical mailing address

Thank you - Chris





Handfull of morning supplements

Tasty Nutritous dinner of Baked Wild Caught Salmon, one of our Favorites,
and Local grown Sweet Potatoe with Local Honey mixed in.

My First 12 hour IV infusion of the Clinical Trial Drug Duratumumab, an Anti CD38 Therapy.
Hoping to add to the current and previous patient results in hopes it will be aproved by the FDA
and therefore available to other Multiple Myelma Patients.
I was the only person they knew of that was on the Clinical Trial
that did not have reactions during the first 12 hour infusion to the point
they would need to stop Duratumumab infusion, administer more Steroids and Benadryl
to combat the reactions, then restart the Duratumumab at a slower rate.

First Duratumumab IV Infusion - After 4 years you get used to needles, even the large IV needles
Same day as picture above

Annual Trip we take to the Blue Ridge Mountains with our Car Group Friends
Wouldn't miss it for anything, Been going since 2005,
and it's even where my beautiful wife and I were married 07/07/2007,
With all our extended family/Car freaks

Hello all. On August 4th 2011 I was diagnosed with Multiple Myeloma, a cancer of the plasma cells. I am an otherwise healthy 43yr old male. Never smoke, drank, or took any drugs. Very active. Then BAM. The typical Multiple Myeloma slow down, rib and back pain that I thought was pulled muscles from building a garage and doing other things around the house, and bruising more than normal that wouldn't heal. My sinuses bled for a week straight, another MM symptom. After 8 months of that and ending up VERY tired if I did anything I went to the hospital. The ER drew blood and immediately admitted me. I was at an HGB 7.3 (normal for a male is 14). I started getting blood transfusions that night once they did the cross match and got blood from the blood bank in Charlotte.

Over the course of a week in the hospital and receiving 4 units of blood my numbers came up slightly. They were waiting for the SPEP (test for monoclonal protein found in the blood of MM patients) to come back and they did a bone marrow biopsy. So they released me.

The next day, August 4th 2011,  they called with the results. As the hematologist/oncologist expected it was Multiple Myeloma.

85%-90% cancer in the bone marrow, 8.9 M-Spike (5+ is stage 3). This made me stage 3, the highest stage in MM. Luckily I did not have any of the common kidney issues which is due to the calcium leached from the bones which ends up in the blood and clogs the kidneys. This was the highest M-Spike number my oncologist had ever seen. Most patients are diagnosed with an M-Spike around 5 and he had some that were in the 7 range. With the 8.9 and 85%-90% cancer in the marrow he said in 1-2 more months I would have bought the farm. Due to the lack of health insurance I waited longer than I should have to go to the Dr. Luckily I went when I did. 

Well, a few days pass and after sitting on the couch watching TV I get up and find I was siting in a large puddle of blood. Like someone was shot. My bone marrow biopsy site had started to bleed. It took my loving wife 1 hour with ice and LOTS of pressure to get it to stop. But it stopped.

2 days later while we were out shopping for a recliner that would be more comfortable to rest and sleep in versus the bed due to the rib/back pain and the biopsy site, it started to bleed again. Luckily we were within minutes of the hospital. So we pop in to the ER.

They drew blood. My HGB was at 6.3. Even lower than before and critically low. I was admitted and got 6 more transfusions, 4 bags of Cryoprecipitate due to my lack of blood clotting, plasma, etc. With all the fluids etc I ended up with an enlarged heart and breathing issues. So I spent 2 days in the ICU of which I don't remember much. I had to have breathing therapy, Echo-cardiogram for heart function etc. Echo came back excellent. They said it was enlarged due to all of the fluids.

I was diagnosed with FactorX also known as Factor 10. A blood clotting issue. Blood was leaking out inside soft tissue as fast as they were giving it to me. Once they got my Vit K up and the Cryoprecipitate in me the bleeding stopped and I was released with an HGB of 9. Not the 14 I should be at but high enough to be released.

I then started my Chemo. Velcade subQ @ 1.7 Monday and Thursday with 20mg Dexamethasone, Revlimade 25mg every day for 14 days. I am on a 2 weeks on 1 week off  cycle.

My M-Spike dropped from 8.9 to 2.2 after my 2nd cycle. After my 4th cycle it dropped to 0.5. My blood work has been progressively getting better since the start of chemo. My current HGB is 15.4 (up from 6.5), HCT 45.2 (up from 21), Platelet 210K (up from 63K), WBC 8500 (up from 5200). My oncologist, Dr Brouse, is beside himself with the response I have shown after only 4 cycles.

Update: After 5 cycles I am responding so well I was able to skip my 6 cycle of chemo. My M-Spike has come down to 0.1 and my Bone Marrow Biopsy is down to 2%. I am now waiting for my Stem Cell Bone Marrow Transplant. I have an appointment at John's Hopkins Kimmel Cancer Center on December 15th to go over the program and what to expect. 

I also changed my diet, much healthier, lots of veggies, fruits, soy milk. No dairy, meats, processed foods including cereals and breads. I also supplement with Flax seed oil, curcumin 1 morning/2 afternoon/1 night, chlorella 2 morning/2 afternoon/2 night, spirulina 2 morning/2 afternoon/2 night, Green Vibrance, Vit C 1000mg 1 morning, 2 afternoon, 1 night. I eat lots of fresh veggies like brocolli, carrots, salads (dark greens), squashes, avocados, cauliflower, greens, and others. And fresh fruits of all kinds.

I had dropped from 140 lbs to 128 lbs but have been able to put the weight back on with diet and light exercise. Overall I feel 100% better than I did just 4 months ago. I was in bad shape. I still battle with very bad bone pain on a daily basis which gets worse when I do any physical activity. But overall I am feeling much better than I was.

I will need a stem cell bone marrow transplant around the first of the year. Just looking for a way to fund it as I do not have health insurance. It will cost around $150,000. This ordeal has also come with huge medical bills up to this point with a month in the hospital, two days in ICU, tests, tests, and more tests, CT scans, xrays, MRIs. Chemo drugs are $18,000/month. The weekly blood tests and office visits pile on even more.It's overwhelming.

 I have worked all my life since I was 15 years old. Due to the economy, my wife and I are both uninsured. We don't have cable or satellite. We have an antenna and catch a few channels when the weather is good. We don't go out to eat or go on trips. Our house was built in 1920 and does not have central air/heat, but we do have a wood burning stove for when it gets real cold. We have great neighbors whom have kept us stocked on firewood. We don't have fancy new cars. We have always tried to live below our means and were doing great when the economy was booming and we were both employed. Now we are struggling to buy groceries. BUT I am winning the fight against cancer and feeling better every day. And for that we are happy! 

UPDATE 12/15/2011
Great news at our consultation at Johns Hopkins on December 15th 2011. My gene/chromosome testing was done and the results are in. With the testing they can determine the likelihood of getting into complete remission and the ability to stay in remission for a long time.

A big factor is Chromosome 13 Deletion. If you have this deletion the prognosis is poor and getting into complete remission is difficult and often doesn't last long if you do. I do NOT have Chromosome 13 Deletion!

Another factor is damage to the chromosomes, which I also do not have. I also do not have translocation (11;14) which is great, this would cause a poor prognosis as well. I have the best genetic/chromosome setup for multiple myeloma you can have.

Having Multiple Myeloma stinks, but this news means I have the best odds for getting into a full remission and staying in it for a long time.We are trying to get the transplant in January but still trying to raise funds for it.

Thanks for reading...It has been a daunting six months. LOTS of info, lots of shock. I have a great wife whom has been by my side 110% and is very supportive.I also have been blessed with a LOT of great family and friends whom have all been here for me giving the support I so needed to help in this battle.

UPDATE 2/9/2012
Went to Johns Hopkins Sidney Kimmel Cancer Center 1/31/2012 - 2/5/2012 for tests. PET scan, MRI, blood work, bone marrow biopsy, and bone marrow harvest.

Still pushing back the stem cell bone marrow transplant due to raising money and now I need to go on chemo again because I waited too long while being off of chemo. 

I had my bone marrow biopsy on Tuesday. Still under 5% cancer in the marrow. Had another SPEP blood test and my M Spike did rise from 0.1 to .76. Been too long since I came off chemo. We thought we would have the stem cell bone marrow transplant by now. Going back on chemo for 6 weeks to clean up some more.

They also took 14 tablespoons of bone marrow from both sides of my hips as part of the Activated Marrow Infiltrating Lymphocyte trial I am going to add to my normal Stem Cell Bone Marrow transplant. And I thought the bone marrow biopsy hurt, this hurt worse, and on BOTH sides. They tried conscious sedation but it didn't work. They were so worried about the pain since it wasn't working they wanted to stop halfway through. I said, NO, we are this far, just keep on going. Damn that hurt. And now my but hurts. Luckily they did more on my right and that side hurts a lot and the left not so much. So I can sit leaning more to the left. Not too bad.

PET scan showed I had bone lesions from the Multiple Myeloma, but my body has healed them. The PET showed the healed spots on a molecular level. Science, it's crazy. Surprised my body healed them without bone drugs like Zometa. Good diet, supplements, and staying active! Still have bad pain in a few spots on my spine and neck and shoulders. Have an MRI scheduled here at Johns Hopkins on sunday 

Results from MRI are back and show why I have the pain in my spine. Degenerative Disc Disease in C3-C7, T3-T6, and L2-L5. Good news is there was not any bone damage. It is very common for Multiple Myeloma to damage the spine to the point of totally losing vertebrae from the cancer destroying the bones. My bones are in great shape. So I have some pain, that I can deal with.

Got the call from the oncologist today, it's going to cost $10,000 for the 6 weeks of chemo therapy. That puts us a bit behind. Time to sell more of my stuff. 

UPDATE 2/20/2012
Waited too long for my stem cell bone marrow transplant after chemo (trying to raise funds). My Mspike was down to 0.1 on 11/2011. On 1/31/2012 it had risen to 0.76. I just got the results from my test last week. It is now 1.7. We are trying to get chemo lined up to knock it down again. Nothing setup yet. Should have something setup soon.

Thanks for stopping by and reading my story. I will update when I have new information.


UPDATE 3/01/2012
Started my new round of Chemo today. Trying just Velcade and Dexamethasone and leaving Revlimid out due to it's harmful effects on stem cell harvest for the bone marrow transplant.

UPDATE 3/21/2012
Hey, guys. We thought we would have good news to share, but we have the opposite. My blood tests came back and the current chemotherapy treatment is not working. My cancer numbers are continuing to rise at a scary rate. My Mspike is now up to 2.3 and my IGA (Immunoglobulin A) is up to 2710 (should be 350). I have IGA Multiple Myeloma which accunts for 25% of MM patients. It produces extra IGA.

We are waiting to hear back from Johns Hopkins as to what the plan will be now, since my numbers MUST come back down before I can have the transplant. We had already taken the money for this round of treatment from the transplant fund and will have to do so again. We were within $1k of our goal before we got this news. It's disheartening and frustrating, but we will wait to see what we need to do next to get this shit beat back down. Thank you all for the thoughts and comments you have been sending as well as the donations. We'll let you know once we know something more.

UPDATE 4/05/2012
Blood Test Day! Well, they will take my blood...then we wait up to a week for results....Man that wait just drives me crazy :) Hoping for lower numbers, of course. If they are not lower we will add Revlimid to the Velcade and Dexamethasone I am already on.

Funny part, Dang SPEP test, Serum Protein Electrophoresis test costs $1,000. You would think they could do it faster than a week for that kinda money. Having it done every few weeks is racking up LOL.

UPDATE 4/12/2012
Got my test results today. I kinda knew cause my bones have started hurting again. Mspike has risen again, up from 2.3 to 2.9. IGA (immunoglobulinA) up from 2700 to 3289 (normal is 350-400) my other immunoglobulins (IGG, IGE, IGM are almost non existent due to the broken IGA crowding them out. This makes my system susceptible to infections and allergies. I am close or back to stage 3 again. Starting on Revlimid ASAP. More chemo...more money....Yay!

Yes, transplant pushed back again. Gotta get my system super clean to get the transplant. So back on revlimid which worked the first time. Probably at least 9 more weeks of chemo since the numbers have gotten so high.

Disappointed but not sobbing in the corner. I am still around to complain about it so....all is good so far.

UPDATE 4/30/2012
Test results from last week are back, kinda early this time!

Immunoglobulin A has dropped from 3289 to 3089! (normal is 350-400)
Mspike has dropped from 2.9 to 2.6! (normal is 0)
This is with only 1 week on Revlimid added to the Velcade and Dexamethasone I was already taking that was not working on it's own. YAY!

Overall aside from dizzy and wore out I feel pretty damn good. Another week of chemo almost down, one more week then a week off and another test! I am kicking ass and taking names. Thanks to Vicki Hill for being the bestest most supportive wife ever!

Found out today from the original gene testing (FISH test) done at time of diagnosis that I don't have any poor prognosis gene deletions and have a good prognosis translocation T(11:14). Good news. 

UPDATE 4/30/2012
Had my last Chemo Shot (Velcade) of this cycle yesterday (2 weeks on 1 week off). Take Chemo pills daily (Revlimid) until Sunday. That will end this Chemo cycle and I start a chemo free week Monday the 14th. I will have blood drawn Thursday the 17th for another SPEP test to see where we are at. And get the results the following week.

Added some things to the diet to help fight and have a better overall diet.
Eating two Brazil nuts per day for the Selenium.
Eating Millet and apricot seeds for Laetrile (B17).
Selenium and Laetrile (B17) are both known for their cancer fighting abilities.
Added Amaranth grain, Black rice, and Quinoa grain all for their super food nutrients. Packed with amino acids (protein), vitamins and minerals not found in today's processed white rices, flours, and breads. Of which we have cut out. The stuff just ain't good for you. 

Feeling pretty good aside from chemo tired at times and some Peripheral Neuropothy (burning hands and feed due to nerve damage from the chemo) But it mostly comes and goes, so it' not a big deal.

Thanks for all your support. We are getting closer to the Stem Cell Bone Marrow Transplant I need!

UPDATE 5/21/2012
Blood tests results back from last week. M-Spike down from 2.6 to 1.1 (wholly crap) and IGA down from 3289 to 1537...WOW

My transplant Dr at Johns Hopkins wanted me to get down to M-Spike of 1.4 so I will contact her with the results and see what we are going to do. It may be time to schedule the transplant :b

My Transplant oncologist/hematologist at Johns Hopkins agrees with me to go thru at least one more chemo cycle (2weeks) since I am responding so well up to this point. I am more than happy since the cleaner I am going in the better chances of a full remission and longer remission afterwards. I have no problem going another month on Chemo, it's been almost a year, no reason to cut short now.

UPDATE 8/20/2012
Up at Johns Hopkins Hospital for 3 weeks now. Today is Stem Cell Collection day. The Neupogen growth hormone shots worked very well. I was able to have enough stem cells collected in just 2 hours of apheresis. And even have enough left over for 2 more transplants.

UPDATE 8/25/2012
Starting my 2 days of High Dose Melphalan Chemo to start the Stem Cell Bone Marrow Transplant. These two days of high dose chemo will kill the remaining cancer in my bone marrow as well as all the marrow in my bones. Which is why the stem cells were collected before this high dose chemo.

UPDATE 8/27/2012
This is what we call DAY 0. The day I get my stem cells back. My new birthday. The stem cells will find there way into my bones and start to produce bone marrow. Then the new marrow will start making new blood. 

UPDATE 9/08/2012
Woohoo. My stem cells have engrafted and have started to make bone marrow. My blood numbers are slowly climbing :b I am almost a week ahead of schedule according to the doctors.

Still 0. Neutrophils, the bacteria fighting white blood cells, but they should pop up in another day or two.

UPDATE 9/26/2012
We are back home!

While I am doing very well all things considered, I am far from "recovered".
My new bone marrow and blood numbers bounced back pretty fast compared to the average. Very happy with that. But I am still on a long road to being 100%. It will take 6-12 months to develop an immune system. So I mask up everywhere I go.

I run out of steam VERY quickly and easily. They say it can take
a year before energy levels are like they were pre transplant. The body it just doing so much on a cellular level it gets worn out fast.

So I have to be careful and take things slow. Hard for me to do but....better than getting sick.

Thanks everyone for the awesome support!

All the medical bills, past and present are piling up and are overwhelming, but at least I am alive to worry about them.

UPDATE 2/27/2013
Bone marrow and blood tests for my 6 month post bone marrow transplant checkup are back.

Bone marrow is clean and M-Spike is 0. I am in remission and have been off chemo since the transplant. Yay! Been a crazy 18 months that for sure. Far from over since it's not a cureable blood cancer, but this is great news! To be in remission this long with no Chemo!

For now I will continue with monthly blood tests to monitor overall blood health and SPEP test for signs of Multiple Myeloma, then have another bone marrow biopsy at my 12 month post transplant.

UPDATE 6/01/2013
I know these get old......but...still exciting for me.

9 month post bone marrow transplant blood test numbers are back. Everything is still holding steady. Same 0.1 m spike.
And all other blood results on track. Not on any maintenance drugs.

UPDATE 7/22/2013
Well, we all knew this time would come. I was lucky and happy to have had almost a full year cancer and chemo free thanks to my Stem Cell Bone Marrow Transplant. The constant looking over my shoulder waiting and worrying for the return has ended. It strangely brings a sort of relief not having to wait, constantly wondering and worrying. Multiple Myeloma is a blood cancer with no cure, so we knew the transplant may only be a short respite, some relief from constant chemo. And we are thankful for the 11 months it gave me. Many aren't as lucky.

My MM is very aggressive, it grows very quickly. It has shown in the past to grow from nothing to stage 3 within 3-4 months if not treated. Therefore 11 months post transplant without chemo was a surprise to me. And again, we were thankful to have had it.

I am still in the "coping" stage. Dealing with the news that I have been waiting for. Somehow I thought hearing it would have been easy, since I knew, at some point, it would return. But all the preparation has not prepared me for the news. It has been 4 days. Friday I was devastated, over the weekend on and off sad/mad with moments that were not too bad. Today, well, today I accept the challenge once again.

I have changed my supplements around a bit, increased some, and will start on a supplement called Wobe-Mugos which has shown great promise in many cancers, especially Multiple Myeloma. I will need to cut back my hours out in the hot humid summer time service for us,
garage so I can give my body a better chance at recovering and repairing itself. Working later at night when ti is cool. Lucky my Brother in Law just moved back down. As a lifetime Tech and certified Tech under many car brands, his help will be key in keeping cars moving in and out of the Ninja Shop.

So the Fight Is On! Thanks to everyone for keeping us in your thoughts and sending positive vibes. Without all my great Family and Friends this would be a very tough battle.

UPDATE 7/29/2013
I have increased my Merivia Theracurmin from 500MG morning/500MG Afternoon/500MG Slow Release at bed time to
500MG and 500MG Slow Release morning/500MG and 500MG Slow Release Afternoon/500MG and 500MG Slow Release at bedtime. I have also started Wobe Mugus. 3 pills early 45 minutes before meal, 3 pills later in the day 45 minutes before meal. 

I am due at Johns Hopkins for my 1 year post bone marrow transplant tests. Full bloodwork including CBC, SPEP, UPEP, FISH. Another non sedated bone marrow biopsy. Full skeletal scan and spinal scans since my spine and rib pains have been increasing for a few months now. So I will have more results sometime in early September.

UPDATE 8/12/2013
Monthly blood results are in. M Spike has risen from 0.2 to 0.3

While this is an increase which is bad, it is moving MUCH slower than pre bone marrow transplant. I would go from 0.01 to 3.0 within 3 months.

Probably combination of the bone marrow transplant and a mix of he supplements I am taking to keep it slowed down.

So not great news, but certainly not horrible. Better than we expected. Will wait until my August 29th 1 year checkup at Hopkins where I will get blood, bone marrow biopsy and MRI/CAT scans to see where I am before even thinking of starting any treatment again.

UPDATE 9/04/2013
Well, we went up north to Johns Hopkins in Baltimore MD for my 1 year post bone marrow transplant testing. Still have not been on chemo since before the transplant and while we now know it has started creeping back these tests will let us know a little better how fast and how much.

Lots of blood and urine tests, Cat scans, Gamma Cat scans, and bone marrow biopsy (again with no sedation...OUCH)

Got my 1st year baby immunizations. 6 in all. That didn't go well. The next morning I woke feeling HORRID with a 102.7F fever and threw up banana out of my nose LOL. But by the next day the fever broke and other than weak and sore I was getting over it. Now, 5 days later at home, I am feeling pretty good.

Waiting for all the test results to see where we go from here. It was nice to be off all treatment for a year, but if chemo is what is needed, I did it twice before (4 months then another 4 months) and I can do it again.

I will keep everyone posted. Just bought a REAL juicer, not a $20 walmart "juicer" but a Breville 800JEXL Juice Fountain Elite 1000-Watt Juice Extractor. Supposed to be one of the best. It arrives today and I will finally add this VERY healthy addition to my diet. Can't wait! Would have done it sooner but they are so expensive, took us a while to feel financially safe enough to spend that kind of money. I will let everyone know how it goes. Fridge is stocked with fresh fruits and veggies just waiting for it to arrive!

UPDATE 9/18/2013
So John's Hopkins just called me, looking for contact info for my 3 sisters to get them setup for Bone Marrow donor match testing for an ALLO (donor marrow) Bone Marrow transplant for me. Which is 100 times harder and scarier than the Auto (my own marrow) bone marrow transplant I just went through. They say opposite sex siblings are best, good thing I have 3 sisters. 

Death from just the ALLO procedure alone is 10 times higher than auto and carries with it lifetime GVHD (graft versus host disease) which at any time can be triggered, even by things like too much sun and can result in death.

Scary stuff....I may just stay on chemo for a few years and see how that goes LOL.

UPDATE 4/23/2015
So 4/23/2015

Long update, it's been a while. Still here, kicking ass.

As expected, My Myeloma has mutated. This is a common issue which makes MM so deadly. It's a rare blood cancer (yet more people are getting it and used to be 65-70 yr old, now younger and younger, something is triggering it)

So since it's rare (It accounts for 1% of all Cancers and 10% of all hemaatological disease) and just recently has started to trend higher, there wasn't a lot of therapies (chemo) to treat it. Not much research or research money. Few treatment options. In the last 10 years, and really in the last 5 years that have been multiple Chemo Therapies Fast Tracked thru FDA approval after clinical trials to get more MM chemo on the market available to patients.

There is no cure, so lifetime Chemo keeps it in check. Trouble is MM genetically mutates to become "refractory" (immune) to the chemo you are using. So you move to the next chemo in line. Not all MM patients will respond to ALL chemo available. So some you go to next don't work at all or not very well.

You find another that works, and use it until you become refractory to that, move on to next one you find that works.

Eventually you run out of options, using all the available chemo. And that is when it gets scary. Sometimes if you if you have been off the first or second one you were on for long enough, many many years, you can start the list back at the top and find one that will work that you became refractory to in the past. It is an exception though, not the rule.

Mine mutated genetically after my Bone Marrow Transplant in 8/2012 shown via DNA testing. BUT the chemo I started on when Diagnosed 8/2011 still worked post transplant. So while it mutated, it did it in such a way that is was still sensitive to Revlimid.

I was on no therapy for 10 months post Bone marrow transplant. And my numbers stayed constant. M spike (protein excreted by MM Plasma cells) stayed at 0.1. (only MM patients have an M spike, normal non MM people would have 0.0) for 10 months. then started to rise.

I went back on Revlimid 6/2013. Numbers had climbed to 0.5 M spike and stayed there until 9/2014 wen they started to slowly creep up. I was becoming slightly refractory to Revlimid. Not totally refractory as my MM shoots up pretty fast when off all therapies, but it wasn't holding it back steady anymore. It was time to change or add another chemo to the mix.

I got the last month of 2014 off as a Holiday rest get ready to add more chemo time. It was nice not being on any chemo for a month. By 1/2015 my mspike climbed to 0.8.
I am on 3 weeks on chemo, 1 week off so blood numbers and body can recover. Repeat, repeat repeat forever. I take chemo pills every day of the 3 weeks, and go to the hospital for IV chemo every Wednesday and Thursday.
After my first 3 weeks on 1 off my Mspike dropped from 0.8 to 0.4. Another 3 weeks Dropped from 0.4 to 0.2 Another 3 weeks Dropped from 0.2 to 0.1.

I am just finishing up another 3 weeks on so excited to see if it is at 0.0 yet. Since there is no cure, it isn't called remission, it's called CR - Complete Response. Once I get to 0.0, CR, we will adjust chemo drugs. Lowering dosages to see if lower dosages will keep it down at 0.0.

All the chemo drugs I take are toxic and have side effects, like secondary cancer, skin cancers, etc. Not to mention the hit to the system that takes many of my days away from me. There are days I want to get so much done, and get steamrolled by therapy and run out of steam and have to call it a day. So if I can get the dosage amounts lowered, and still keep it in check, its a win win.

But I am thankful I respond to most of the chemo available, and tolerate it fairly well. I mean, it's chemo, so its not like popping skittles, but some people have a MUCH harder go at it. I do still eat a very good proper nutritional diet, which helps my body fight, repair, etc. Not to mention the emotional support from Family, friends, and the support from the 3S community is overwhelming. You can only imagine how that helps psychologically, until you are witness to it first hand. To this day I get PMs on FB from 3S folks just out of the blue asking how I am feeling, how therapy is going. Means the world to me and helps me get thru tougher days. And I have tough days. But I also have pretty good days all things considered. With as bad as everything could be, I can't complain.

Just yesterday Good news, sorta good news.
Went to ER to get xrays on ribs cause I popped them 2 days ago pushing on something I shouldn't have, loud pop and I was screaming pounding on the floor with my fist. Two days later and the pain was getting worse not better.

With Multiple Myeloma bone fractures are always a possibility. And when I was diagnosed I had let it get so bad (Dr said about 2 weeks I probably wouldn't have made it) the bones leached out a lot so most of my ribs, spine, and shoulders are pre or full osteoporotic. Needed to make sure I wasn't going to puncture a lung or bleed internally.

Good news, no rib fractures. No lung issues. So the pop was just a rib rolling over another and the pain is muscular etc from over extension/exertion of the muscle or tendon etc.

The sorta good is it made me go in for xrays. And they found a compression fracture in an upper thoracic vertebrae. Been a spot that has hurt for some time. So hurting my ribs got me to go get xrays, which found a spine vertebrae compression fracture. Otherwise it may have gone on longer and gotten worse. Now we know to keep an eye on it. I have had MANY bone surveys, spine xrays, MRIs, CAT etc. So I have good history on my spine. This Thoracic vertebrae in the past showed degenerative disc collapse and was a source of a lot of pain. The two vertebrae were close enough and bones brittle enough to finally hit each other and fracture.
While I am not happy about finding it, I am happy I did so we know and can keep tabs on it more closely.

Everything happens for a reason. Thanks for listening,

UPDATE 9/17/2015

Little update.
I became refractory (resistant) to The Revlimid I have been on since Diagnosed 8/2011,
and then around may/june I became refractory to the Kyprolis we added in January 2015.
Numbers kept climbing. Multiple Myeloma genetically mutates so that it can become resistant to the chemo you are using to kill it.
I have been tested and have genetically changed at least twice. This is the hard part about MM. There aren't too many therapies since it's relatively rare, and normally a 70 yr old person disease.
Sadly in the last 10 years younger and younger people are getting it, and more people are getting in. I, and others, believe something environmental is triggering it.
But what this has done is create awareness and more funding/research. More therapies are being fast tracked the FDA, and even faster than fast track program some are being pushed thru
FDA approval under the Breakthrough therapy section which is even faster.

I needed to try something different, I already tried and became refractory to chemotherapy from the two major groups/types of therapy for MM. I needed to try something that attacked it in a different way.
We found a non FDA approved drug that is still in clinical trails and works totally differently than any chemo I have tried. It has shown such great promise in phase 1 clinical trials that it is also being
break through fast tracked thru FDA.

The new investigational drug is called Daratumumab, and it is an Anti CD38 therapy. MM plasma cells have a CD38 protein on their surface, no other cells in the body have this.
It is an investigational human IgG1k monoclonal antibody (mAb) that binds with high affinity to the transmembrane ectoenzyme, CD38, on the surface of multiple myeloma cells.
It induces rapid tumor cell death through diverse mechanisms of action.The Daratumumab attaches itself to cells with CD38 proteins on their surface and cause cell apoptosis, cell death.

It is a type of cell death mechanism I have not tried which is why I wanted to participate in this trail, I needed to try something different since therapies on the two main types of therapies
have failed over the years. I also wanted to help the trail with my info/results in the hopes it will help get it approved and on the market to help other MM patients.
There are more like me whom have become refractory and need options. I want to help get those options to market. This is my second clinical trail I have participated in.

It's been rough. It is by far the hardest therapy I have done. After the first 10 hour IV infusion on 8/26 For 2 straight weeks I had a fever bouncing from 102F to 104.4F.
And my skin, all over, feels like I have 3rd degree burns, super sensitive/sore/painful. The skin sensitivity bounces around from just irritating to wholly hell, just like the fever bounces
up and down. Muscle and bone pains. After 10 days of that fun I ended up in the hospital still carrying a 103.5F, and had Pneumonia. Spent a week in the hospital getting 4 different antibiotics.
Got to leave last Thursday and come home, now on daily twice a day antibiotics, for about one more week. The Daratumumab causes even more depressed immune system so it wasn't a big surprise I got
pneumonia. But I am on the better side of it now.

I got my 3rd treatment, 8 hour IV infusion, Yesterday 9/16/2015. Normally by the next day I would be getting hit pretty hard. So far I feel relatively well.
A little tired, and my 3 fractured vertebrae hurt as they always do, but relatively (compared to after the 1st and 2nd infusion) I feel pretty well.
Tonight will be the test, normally by the next night my fever would start spiking to 102-104F. It's my immune system working over time due to the Daratumumab.
But I should be getting used to it so we are hoping it will get easier.

What is really nice about this therapy, even though it take about 8 hours, its only once a week, and after 2 months I go to once every 2 weeks, then eventually once a month.
We are hoping all the high fevers are my immune system kicking into overdrive so we are hoping for great results. I do get my blood tested, just general CBC numbers,
before treatments as it is supposed to kill good blood cells as well as a side effect. So they need to test to make sure I am well enough to get treatment.

Yesterday's CBC was odd, numbers better than we can ever remember since this all started. HGB at 15.5, HCT at 47, and platelets at 290K. At or better than a normal healthy male (female numbers are different).
Which can only mean most or all of the myeloma plasma cells that were in my bone marrow keeping good marrow numbers down are now gone making space for more healthy marrow to produce blood.
So we have really high hopes for this line of therapy, everything points to it working.

I will get an SPEP test to look for the cancer cell markers in about 2-3 more weeks. We are excited and can't wait.

UPDATE 11/04/2015

Current Bloood Test, SPEP and Imunoglobulin panel tests, shows that my Multiple Myeloma has mutated once again.

Multiple myeloma accounts for 1% of all malignant tumors and 10-15% of hematopoietic neoplasms. 90% percent of Multiple myeloma cases occur in adults over the age of 50 (I was 43 when diagnosed now I am 47) with a median age of 70.

Most cases of multiple myeloma are monoclonal IgG (50%). IgA monoclonal gammaglobulins account for 20%. Which is what I was until recently.

Monoclonal means the patient has only one type of MM and the myeloma plasma cells duplicates/clones only that one type of broken Immunoglobulin cell, the type of MM the patient is. Either IGG (most common), IGA (only 20% of patients and what I have), IGM, IGD, IGE.

I had always been IGA Light Chain Lambda. Not too common, only 20% of all MM patient in a disease that is only 1% of all malignancies. SPEP blood tests always showed MSpike of IGA Lambda Light Chains. And always Monoclonal, single monoclonal band seen on the SPEP blood graph.

I decided having only a single, monoclonal , type MM wasn't fun enough. Where's the challenge in that?

So I have mutated to Biclonol. This is rare, happening 1% in all MM patients, most common in patients that have had a bone marrow transplant, which I did. But didn't change to Biclonal until I went on this clinical trial of Duratamamab.

So MM is 1% of all malignancies, and 10-15% of all blood malignancies, my IGA is only 20% of all MM. And now Biclonal IGA Lambda light chain and IGG Kappa which account for 1% of all MM patients.

On another note, I am currently getting my bi weekly day long iv infusion of clinical trial Duratamamab. Blood tests are back from 2 weeks ago, as spoken about above. My Mspike has dropped from 0.8 to 0.7. Yay.

While that isn't a huge drop, previous to this trial I was becoming refractory (resistant )to therapy and even on chemo it was rising. So even if it just held it steady I would be happy, as anything under 1.0 is fine with me. Many can't get that low. Going from rising while on chemo to dropping even though by a small amount and slowly, I am super happy with that. It's not progressing. At worse it's called stable.

Now If it would stop eating away at my bones that would be great

UPDATE 11/10/2015

Some Fracured Bone Updates

My spine has been getting worse so I had to get another MRI with and without contrast. Waiting on results. Always waiting, that's been one of the hard parts of this journey, waiting and waiting.

Before this latest MRI I already had MRIs confirming Fractured Vertebrae T5, T6, and to a lesser extent T9. They are fractured on the ends, superior endplates, in such a way that since I have no discs left between those vertebrae the vertebrae are now fractured misaligned and crashed into each other. This causes some very unpleasant nerve pinching and some pretty painful days. The Orthopedic Dr says the way they are fractured there is nothing they can do at this point.

Waiting to see what the Radiologist say this go round. Luckily I always have my imaging done at the same place so they look at previous scans to verify if it's stable, or has changed. I, like always, got a CD copy of the images 5 minutes after coming out of the MRI room. Gotta Love technology. To me, the untrained, looking at previous and current MRI images it looks like there is more fracturing and one vertebrae in particular has move forward out of alignment of the vertebrae above and below it. It also looks like there is new fracturing in some lower vertebrae that wasn't there before. But I am not a trained Radiologist, I just play one on the internet I could very likely just be seeing things because my pain level in my spine has really increased in both frequency and length of time. Hurting more, higher level of pain, and lasting days to weeks before calming down from doing the most easy basic tasks. Luckily, even though I am allergic/sensitive to almost all of the good opioid pain relievers so I cannot take them I did find one back in 2012 that works when used in conjunction with another prescription drug for stomach upset which also has analgesic properties of its own. So Taking that with the other helps calm my stomach plus it also helps with pain. I was lucky enough to also find a pain patch that works that I tried previously, about 2 years ago, and I was very sensitive to, making my stomach very upset. I slowly introduced it in small doses and am now able to use it 24/7 which gives me the overnight coverage I otherwise do not get with just pill form meds since I can't take them while I am asleep and I did not want to set an alarm . And it's always best to stay ahead of pain versus trying to knock it down once it is at a higher level. Plus the body reacts to pain by releasing various chemicals, some of those chemicals are damaging to the body and it's organs so staying out of pain, or for me at a lower level since no meds get rid of my vertebrae fracture pains, is not only beneficial to me because I will be in less pain, but it's better for my body and it's organs. And it is always easier to manage pain before it gets real bad than to get pain levels down once they are very high.

So I shall soon get the results and update here.

UPDATE - So yeah, Vertebrae T5, T6 still fracured, slighlyt more now than previously, and now my Fractured Vertebrae count is up to 4. The first two, T5, T6 are worse than they were and that makes sense as I have more pain, more frequent, and higher levels of pain that last longer even doing something you woulnd't think would cause such pain. Like walking too fast. Slams down my feet which equates to pounding the vertebrae that now have no discs and are crashed into each other.

On an Up note, no increased focal uptake on ribs, while my original spots on my ribsx from when I was diagnosed back on 8/2011, still hurt, comes and goes, painful spking bone pain, there aren't any signs of further bone damage progression, so that is great news.

UPDATE 1/21/2016

Hey All,

Just got my blood results back from Last Wednesday's blood draw. I started this Investigational drug on a Clinical Trial September 2015, having an 8 hour IV infusion EVERY Wednesday.

After a few months of that, and seeing positive results I went from EVERY Wednesday to every OTHER Wednesday. And I have been, let's say, concerned. Sure it was working, but it was working VERY slow, lowering my M Spike 0.1 every month, and that was getting it once a week. Moving to the next phase in treatment to every OTHER week had me worried that the small incremental changes for the better maybe because we were hitting it with an 8 hour IV infusion EVERY WEEK, and I worried cutting that down to every OTHER week would allow more time for the Myeloma Cells to regroup and grow.

Well, I was getting a reduction in my M Spike of 0.1 with the once a week 8 hour IV Infusion. Then with the first every other week cycle of 1 month, which means 8 hour IV infusion every other Wednesday for a month is 1 cycle. So instead of 4 treatments per cycle/month then SPEP test, I only get 2 treatments per cycle/month then SPEP test. Well, the first every other Wednesday IV Infusion cycle/month SPEP blood test showed the same trend, another reduction in M Spike of 0.1

Now this was the first Every Other Wednesday, 2 instead of 4 8 hour IV Infusions for the cycle/month and I wondered if maybe it was residual from the previous many months of every Wednesday IV Infusions bleeding into the first every other Wednesday cycle.

So Last Wednesday I had blood drawn for my SPEP test to see how well the Second Every Other Wednesday cycle has done. I was now thinking, we are two months past the Every Wednesday cycles, so no bleed over/left over benefits from the earlier every Wednesday cycles. This second every other week IV infusion cycle/month in my mind was going to stand on its own merit, it has been 60 days now on the every other week schedule. So in my mind the first every other Wednesday cycle/month was transition and I was prepared for a slowdown in response. Now 60 days into the Every other Wednesday, in my mind and from research (you know me), is plenty far away from the every week cycles to stand on its own.

Well, Now thru the second cycle/month of every other Wednesday 8 hour IV infusion and well, I couldn't be more happy. The Daratumumab/Darzalex® is working WITH my body on a cellular level. and my M Spike has once again dropped.

My first three cycles/months with 8 hour IV infusion Every Wednesday My M Spike dropped 0.1 every cycle/month

My 1st cycle/month with 8 hour IV infusion Every Other Wednesday it still dropped 0.1 from 0.6 to 0.5

Just got my results from Blood Draw Last Wednesday My 2nd cycle/month with 8 hour IV infusion Every Other Wednesday it once again dropped 0.1 from 0.5 to 0.4

Slow and steady wins the race. While other Chemo treatments had larger faster drops, they carpet bomb and cause a lot more damage than just killing cancer cells. The Myeloma also is smarter than most and genetically mutates so most chemo for MM works for months, 6 months, maybe a year, the MM learns it, genetically mutates, and bam, your chemo stops working.

I am all about a more methodical targeted approach which is how Daratumumab/Darzalex® works, Targeting cells with CD38 protein expressed on the surface of a cell (only found on MM cells), attaches to that cell and causes cell apoptosis. It also works in a couple other ways that I won't go into here, medial speak that I understand from lots of medical paper research but for most (and me before this journey) wouldn't fully understand.

I think it is this more cell level more specifically targeted approach, aligned with also triggering the body's own defense mechanisms to help find/target and fight against MM cells versus how the other chemo therapies carpet bombing with highly toxic Chemo that has no regard for any type of quickly produced/growing cells like most chemo, that causes the slower decrease in Multiple Myeloma Cells/Tumor Load/and Myeloma Markers but also allows for possible longer term efficacy (effectiveness), longer term control/progression free survival rates before possibly becoming refractory as it's not like Antibiotics against infection. it works by finding cells with CD38 protein on their surface, which only Myeloma cells have. It attaches to it causing cell apoptosis (cell death).

So while Daratumumab/Darzalex® in clinical trials was touted as a breakthrough therapy and therefore the FDA Fast Track approved the drug as a Breakthrough Therapy Designation allowing for accelerated FDA approval, which did occur on November 16, 2015. Designated as a Break Through Therapy because #1 it is for a life threatening disease with no cure and certain death as this therapy was targeted to MM patients whom have already tried and became refractory to 2 or more previous therapies, and #2 the high Efficacy (effectiveness) rate Phase1 trials and then Phase2 trails were showing. Which is what I still find odd, the efficacy rate. I did odd back when I started reading clinical trial outcome papers, and while starting the trial, before it was approved, and still do find this odd...the touted breakthrough and efficacy.

Out of all the Daratumumab/Darzalex® Clinical trials, all Phases, Thousands of patients, the average efficacy (effectiveness) rate is only 29%. To me, a drug that only works 29% of the time is poor odds. BUT this is for patients that have already tried and have become refractory to at least 2 if not 3 different types of MM therapies. So for many of us, this is a hail mary, we have become resistant to the standard 2 or 3 types of therapy. So 29% chance is better than no chance. I have been VERY lucky to be in the 29%

"The pivotal open-label Phase 2 MMY2002 (SIRIUS) study showed treatment with single-agent DARZALEX resulted in an overall response rate (ORR) of 29.2 percent "

Stringent complete response (sCR) was reported in 2.8 percent of patients, very good partial response (VGPR) was reported in 9.4 percent of patients, and partial response (PR) was reported in 17 percent of patients.1 These efficacy results were based on ORR as determined by the Independent Review Committee assessment using IMWG (International Myeloma Working Group) criteria and the range for median duration of response.

For now this is about all the info they have For responders, the median duration of response was 7.4 months (range 1.2-13.1+ months). So they don't have info on how long it may work on those it is working for, they need longer clinical trials to figure that out. Currently it looks like on average the length of time it is working, for those it did/is working for, is 7.4 months. Meaning on average, for those it is working for, it will work for on average 7.4 months. MM loves to mutate, it learns, and changes genetically so it can combat what is trying to kill it. Which is the key to MM, Genetic mutation until you run out of therapies to fight it. Good for us they keep pushing thru research and pushing for fast tracking the therapies through FDA approval. Otherwise we would run out of options a lot sooner.

That 29% effectiveness rate includes those who showed ANY positive response/reduction in MM cells and markers in the blood, no matter how small and didn't matter if it was a small decrease in markers and only lasted 2 months. The 29% effectiveness rate also includes patients that fared better than just barely showing improvement at all the way up to those who had CR (complete response - =5% plasma cells in the bone marrow and no evidence of myeloma proteins in the serum or urine as measured by standard laboratory techniques.) and the Holy Grail sCR (stringent complete response - no detectable plasma cells in the bone marrow or myeloma proteins in the serum or urine using very sensitive techniques) "cured" per say as all traceable markers and testing, using the most sensitive tests like the FISH test. I say "cured Per Say" because there still is not a cure, and aside from a small handful of MM patients that have undergone Allo bone Marrow Treatments (a possible cure but very dangerous). 99.9% of MM patients that achieve sCR eventually have the MM come back. Just a matter of when. Some go months, some 5 and 10 years with no therapy at all. then it comes back. Some keep it in remission (not cured IMO) by continuing on maintenance chemo to keep it down. But even with those folks it eventually mutates and breaks through.

As for Daratumumab/Darzalex®, complete response Progression free times are not fully understood because it is so new they don't have information for longer than a year. More studies for longer periods of time will have to be done to show 5 yr or longer PFS (progression free survival rate)

For now, I am once again lucky. I was lucky enough that every time my MM genetically mutates and the therapy I am on stops working, another had just been approved that I can try, and they work, long enough to leap frog to another that was just approved. Super lucky again after becoming refractory to Kyprolis after only 5 months I needed to try a new therapy, one that wasn't in the 2 main types of therapy. And just in time, I jumped in the clinical trial for Daratumumab/Darzalex® which is what I needed, something WAY different than any other classes of therapies I have tried in the last 4 1/2 years, working on totally different mechanisms. And Lucky on top of that to be in the small 29% of patients that it works on. Sadly there is a person around my age that started Daratumumab/Darzalex® trial one week prior to me, and was getting theirs the same day I was, same hospital. Then they stopped showing up, I asked where my MM partner was, the Daratumumab/Darzalex® wasn't working for him. And since you had to have been on 2 to 3 other specific types of therapies previous and become refractory to be in the trial, I worry what he has left to try. That wasn't a good day for me. It hurt my heart. I hope he finds another therapy that works.

So long story short
Another SPEP result
Down again another 0.1 like every month prior since August 2015
So M Spike was 0.5
Last week's blood test result M Spike 0.4
So dropped from 0.5 to 0.4.
Looking forward to about 3 to 4 months having it at 0.0.

UPDATE 4/20/2016

As most know, I started a clinical trial therapy Duratumumab before it was FDA approved due to becoming refractory (resistant to therapy due to my myeloma genetically mutating to resist it as Multiple Myeloma does and the reason there is no cure and one of the highest death rates of any cancer, you simply become resistant and eventually run out of options) to Velcade. Revlimid, and then most recently the newish wonder drug kyprolis which gave my 5 great months allowing me to move forward in time to be able to enter this clinical trial, which is the entire strategy, leap fogging forward enough in time to be around and we'll enough to try the next new therapy. Duratumumab is a different class of drugs than any of my past therapies so it's helping those whom have tried 3 or more therapies in two or more classes in the past and have become refractory to them. I needed to try a different aproach since the current types had stopped working. Duratumumab only had a %29 success rate, response of any kind even partial for 1 month. Others have seen as high as a complete response and 8 months before it breaks thru. But this is for a group of patients that have become hard to treat, so 29% sounds low but for this type of group it's been haralded as magic. Even when most only get a few months partial response (as with me, numbers drop but never to 0 and only for a few months.) I started Duratumumab back on 8/26/2015 as part of a clinical trial due to all my past therapies since 8/2011 including my stem bone marrow transplant on 8/2012, all extending my life, also have failed after working for various lengths of time. Even with only a 29% chance of any response even partial and short lived as it may have been i was in. If anything it would help me leapfrog to the next available therapy. It's what we do. Keep pushing thru what is available to make it to the next clinical trail.

I was told from the beginning, by two MM specialists, that my MM is very aggressive, oddly that I don't have any of the known poor prognosis issues, genetic mutations, translocations, gene deletions, but it is still very agressive. When a therapy stops working or starts to become less effective, my MM grows at a very rapid rate. It's always easy to tell when the therapie(s)have been beaten cause my number move quickly.

And so comes today's Dr visit. I had blood drawn last week for my SPEP. I am tested every couple weeks to a month depending on therapy. My cancer markers have more than doubled from last month. On Duratumumab it Took 6 months to get from my starting 0.8 mspike down to 0.4, slow steady 0.1 drops per cycle/month. It then hit a plateau staying at 0.4 for 2 tests. Last week's test results are back. In 3 weeks, while still currently on Duratumumab, it shot up from 0.4 to 1.0.

Almost 8 months dealing with Duratumumab, some of it pretty taxing as it was a tough therapy to push thru but with the positive results I had no problem doing what needed to be done, all wiped out in 3 weeks. But it's what we have come to expect when it mutates. Many aren't as agressive as I am but have worse problems of not responding to most available therapies, my heart goes out to them. Being already at 1.0 and having that size of an increase that quickly, we will be acting quickly to find the new therapy or mix of old and new so I can start as soon as I can before it gets out of control and even more taxing to my body. And harder to get ahead of. My oncologist/Hematologist is great but only 45 minutes away is one of the world's leaders in MM research, clinical trails. Etc. We have an appointment with him next week, along with another PET scan with and without contrast to try to figure out why my spine is 50% worse than just 8 months ago. We are thinking the MM may have eaten more bone mass. Last MRI about 6 months ago showed myeloma cell bone marrow involvement. Staying ahead of spine pain has been an ever increasing part of my daily grind. So, no more Duratumumab, and we will find what is left to choose from and go from there. I am happy it pushed me 8 months forward so now I have about 3 more therapies at my disposal than was available months ago when I started Duratumumab. For that I am very great full. We figured it stopped working for me about 2 months ago. Getting more and more tired, worn down to my core, spine pain increasing exponentially. It's inevitable and expected. One just never knows if it's 1 month or 1 year. On to the next, probably another form of hi tech immunomodulatory and or immunotherapy also coupled with newer types of chemotherapy. And of course, Dexamethasone. It's called the beast on purpose.

Yes, every weekly, bi, monthly blood test is like getting tested for cancer all over again Told Vicki earlier, from this quick huge increase, every time I find I am refractory is like being diagnosed/told for the first time I have cancer. It's a scary disease for sure Thanks for listening and as always thanks for all the positive support, it really helps push thru those darker days. Thanks for listening,