[ninja performance]

Newly Diagnosed 43yr old with 8.9 M-Spike

by ninja performance on Tue Oct 25, 2011 4:52 pm

Hello all. I am a newly diagnosed otherwise healthy 43yr old male. Never smoke, drank, or too =k any drugs. Very active. Then BAM. The normal slow down, rib pain I thought was pulled muscles, bruising more than normal that wouldn't heal. After 8 months and ending up VERY tired if I did anything I went to the hospital. ER drew blood and immediately admitted me. I was at an HGB 7.3. I started 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 SPEP to come back and they did a bone marrow biopsy. So they released me. The next day they called with the results . As the hematologist/oncologist expected it was multiple myeloma.

80% cancer in the marrow, 8.9 M-Spike. Luckily I have no bone involvement and no kidney issues.

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 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 over the bed due to the rib/back pain and the biopsy site, it started again. Luckily we were within minutes of the hospital. So we pop in to the ER.

Well, they drew blood. My HGB was at 6.5. 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. Spent 2 days in the ICU of which I don't remember much. 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 VitK up and the Cryoprecipitate in me the bleeding stopped and I was released with an HGB of 9.

I then started my Chemo. Velcade subQ @ 1.7 monday and thursday with 20mg Dex, Revlimade 25mg every day 14 days. I am on a 2 week on 1 week off .

I am on my 5th 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.

I also changed my diet, much healthier, lots of veggies, fruits, soy milk. No dairy, meats, processed foods including cerals 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 to 128 but have been able to put it back on. Overall I feel 2000% better than I did just 2 months ago. I was in bad shape.

I am looking at stem cell BMT around the first of the year. Just looking for a way to fund it as I do not have insurance or a job. Looking at the Obama pre existing which covers it. But need to come up with the $350/month and the $6,000 out of pocket. Looking at Johns Hopkins or Duke.

Thanks for reading...It has been a daunting few months. LOTS of info, lots of shock. I have a great wife whom has been by my side 110% and is very supportive.

-Chris

Last edited by ninja performance on Wed Oct 26, 2011 10:51 am, edited 1 time in total.

[Ricardo]

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by Ricardo on Wed Oct 26, 2011 5:53 am

Thanks for introducing yourself, Chris.

It's saddening to hear all that you've been through so far, but it's also inspirational to read about all the progress you've made since you first were confronted with your myeloma diagnosis. Not only is your body responding well to the treatment you're receiving, but you also seem to made the mental adjustments needed to keep your health problems from overwhelming you.

As I said, that's inspirational ... and just plain impressive.

Your case is certainly one of the more complicated ones that has been described here in the forum. But, if it is any consolation, I think you will see as you read through the postings that there doesn't really seem to be a "typical" case of myeloma. I suppose that is what makes treating the disease so challenging, and why people are pushing hard towards more personalized treatment.

One thing that I noticed when I read your posting is the relatively high doses of vitamin C that you're taking. It's certainly a good thing that you're spreading out the vitamin C across the day, since, as I understand it, it doesn't stay in your body very long. But I wonder if the doses you are taking might place a burden on your kidneys that you may want to avoid given that you're dealing with myeloma, which itself can put a burden on the kidneys.

I'm not an expert on these things by far, so you probably want to discuss the subject with your doctor. Others here in the forum also may have opinions or experiences they can share.

In any case, again, welcome, and keep us posted on how you are doing and let us know any questions that come up along the way.

[Dr. Ken Shain]

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by Dr. Ken Shain on Wed Oct 26, 2011 8:24 am

I am glad to hear that you are responding well. And you did have a complicated disease with acquired factor X deficiency. As you stated you are 4 cycles in on VRD with an apparent Very Good Partial Response (VGPR)- greater than 90% decrease in M-spike.

I may be inferring incorrectly , but iIn terms of transplant, you mentioned that you are looking at Duke or John Hopkins. It sounds as though you have not already been referred. If you have not already had a transplant consultation/referral, I would recommend you get one as soon as you can. Because they will take education, planning, and scheduling. There will also likely be options for someone of your age; standard high-dose melphalan with Autologous stem cell transplant, clinical trial variants of this, or clinical trial with allogeneic stem cell transplant. Furthermore, these groups will have social workers/case managers who will help identify mechanisms for finicial assistance.

Also, with your therapy- specifically the Revlimid- most transplanters like to have your cells collected and transplanted before the 6th (-8th) cycle to maximize the collection of your cells. It is possible to collect cells beyond that, it just decreases the yeild of cells in some cases.

Again, you may have all of this taken care of, I just wanted to ensure that you were moving in an appropriate direction. And best of luck.

[ninja performance]

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by ninja performance on Wed Oct 26, 2011 11:03 am

As far as the Vit C, I (like most other multiple myeloma people) have done lots of research. High Vit C doses seem to be normal for helping combat cancer. I am only taking 4 grams/day. And yes, since it passes thru the body quickly and extra is not absorbed for later use, spacing it out thru the day keeps levels up. I have seen studies using 10G/day and more. Some show no difference between real and placebo groups. A study Hopkins did in 2007 showed good results for VitC.

So far all my kidney tests have been perfect. So whether it helps or not, I am figuring it can't hurt. As long as my kidneys aren't being harmed. But we will keep an eye on it for sure.

I have not started consults as we haven't figured out which hospital to use. Thanks for the heads up though, my oncologist also warned that too much rev will harm the stem cells. He is going to stop after my 5th cycle that I am currently on and drop the last 6th cycle since my M-Spike is already so low. He doesn't want to keep "poisoning" me any more than needed as he put it.

The issue with hospitals has been coverage as I do not have insurance. It's been tough. Luckily Velcade and Rev have both given me the drugs for free. Otherwise I would not have been treated.

I will be calling the hospitals today and see what they say. Both are in the PCIP program. Which I have to sign up for. It's tough being unemployed and uninsured.

Anyone have experience with Duke or Hopkin's stem cell BMT programs?

thanks
Chris

[Beacon Staff]

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by Beacon Staff on Wed Oct 26, 2011 11:44 am

Hi Chris,

If you are considering Duke, then it seems only fair that we note that you might want to consider UNC Chapel Hill, where the Beacon's Medical Advisor Dr. Peter Voorhees is based, and the Moffitt Center in Florida, where Beacon Medical Advisor Dr. Ken Shain is based. Moffitt also is where our patient columnist Pat Killingsworth is being treated.

Good luck with your decision!

[ninja performance]

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by ninja performance on Wed Oct 26, 2011 11:58 am

My oncologist, Dr. Brouse, sends his patients to Chapel Hill for BMT, but they are not on the PCIP network, so they are not an option unfortunately.

[Dr. Ken Shain]

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by Dr. Ken Shain on Thu Oct 27, 2011 7:58 am

I would recommend you continue to be proactive in pursuing consolidation therapy (transplant options) at first remission. However, it is also important note that people transplanted during their second remission do equally well. I am a big proponent of having it done earlier rather then later, because we avoid the "if" you get into a second remission/response.

Best of luck and please keep us informed of your progress.

are you working with your Dr. social worker to get enrolled in supportive medical services?

[ninja performance]

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by ninja performance on Thu Nov 10, 2011 5:27 pm

After 5 cycles, dropped 6th cycle due to response at this point, got my M-Spike test back. Down to 0.1!

Had my end of chemo before SCT bone marrow biopsy done today. Will get results Monday or Tuesday.

-Chris

[laetetia]

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by laetetia on Fri Nov 18, 2011 6:03 am

I'm a bit confused as to why you would still need to undergo a SCT if your M spike has dropped to .01. I guess it would be a good idea to collect the stem cells while the M spike is so low in case of need for future use but we were told in Australia that we didn't have any worries about having to consider more treatments until the paraprotein level was over 10. My partner is nowat 15.2 and just started the Velcade. He has enough cells harvested for a second SCT but its not something that will be done while his levels can be dropped with medication and by natural means. We actually had quite a bit of success with Vitamin B12 too. He takes a 1000 mg tablet twice a day.

[suzierose]

Re: Newly Diagnosed 43yr old with 8.9 M-Spike

by suzierose on Fri Nov 18, 2011 8:37 am

Hi Ninja!

You wrote:
"I then started my Chemo. Velcade subQ @ 1.7 monday and thursday with 20mg Dex, Revlimade 25mg every day 14 days. I am on a 2 week on 1 week off .

I am on my 5th cycle. My M-Spike dropped from 8.9 to 2.2 after my 2nd cycle. After my 4th cycle it dropped to 0.5"


------------

What a great response! You are on a 14 day cycle vs. 21 day cycle? How did your physician decide to use 14 day vs 21 day. Are you in a clinical trial exploring this dosage regimen? This is wonderful news, shorter therapy with a great outcome.

I was wondering like Latetia, is your doctor recommending a BSCT despite your great M spike after 5 cycles?

What factors are driving his decision is it serum or other bone marrow results ? e.g. FISH results, light chain assay ratios, immunophenotyping, depth of response ,positive immunofixation, or aggressiveness of the tumor given how you initially wrote:

"80% cancer in the marrow, 8.9 M-Spike. Luckily I have no bone involvement and no kidney issues. "

You mentioned you have no bone involvement, did they ever determine what your initial rib pain was due to?

Or if you are in a clinical trial is the BSCT part of the protocol?