[Stoev67]

Am in complete remission - do I need second transplant?

by Stoev67 on Mon May 12, 2014 1:30 pm

Ok , so 1 year ago I had an initial stem cell transplant. All my results are coming negative -- I reached complete remission. And now the doctor is considering and thinking about a second transplant.

I think they should have done that within a period of six months. He thinks it's better if I have a second transplant when all my results are good. But I am not sure if it's better to do it or not. So that's why am asking here.

This is my first question here on this forum. I found you while looking for some opinions on that. I think I am feeling better and I don't feel the pain that much. I have some neck pain and knee pain if I walk a lot, but everyday seems like it's getting better.

So I would like to hear some opinions. I would really appreciate it.

[antelope1225]

Re: Am in complete remission - do I need second transplant?

by antelope1225 on Mon May 12, 2014 2:39 pm

I would not want another bone marrow transplant unless I absolutely HAD to have it!!!

This last week I had stunning improvement from eating low carb. It is only 1 month of this, so I will post after my next doctors appointment - but it is too incredible not to tell everyone with cancer: I had the best kidney numbers in over 2 years, best light chain numbers since spring 2013, and my blood chemistry went into normal range in 4 other blood chemistry areas!

I was diagnosed with multiple myeloma and light chain deposition disease Memorial Day of 2012. Light chains had destroyed 75% of my kidneys. I had the difficult treatment of dexamethasone (40 mg 4 days on 4 day off) Velcade shots twice a week, thalidomide, and then Revlimid from May 31- Oct 31. I had a BMT at Colorado Blood Cancer Institute in November 2012.

March 23rd I asked my doctor about some "wild claim" that not eating sugar could prolong remission. He said the new studies show that if a cancer patient keeps their blood sugar low and steady (radical low carb diet like Atkins) studies show that can prolong remission!

So, I started trying to do low carb. It is hard, so I did Internet search to boost my resolve. I looked up "cancer & blood sugar" and found a lot of studies saying what my doctor said. I bought a book called Diabetes Solution by Dr Richard Bernstein on how to "normalize blood sugar". and I finally even got a glucose meter to test my own blood and see what the results were of different things I ate.

On May 5, the results of about 1 month of trying to watch my blood sugar were stunning:

Lab Results:

             2012               2013         May 5 2014
Creatinine   1.987 - 3.1        1.8-2.4      1.463557!
Kappa FLC    94.00              up to 6.29   2.54!
Lambda FLC   don't have these   3.95         2.55
K/L ratio    don't know         1.60         0.996!

I have been eating this way only 6 weeks - but it is SO important that every cancer patient should know - if they can eat radically low carb it seems to starve the cancer cells of glucose.and the articles I read on Internet said that insulin also stimulates cancer cells! So low carbs helps with both of those.

My doctor was so impressed with my numbers he scheduled my next appointment for 8 weeks (instead of 4 weeks) - so, I will post again when I have new numbers

TRY RADICAL LOW CARB!!! It seems to starve cancer cells!

[darnold]

Re: Am in complete remission - do I need second transplant?

by darnold on Mon May 12, 2014 5:33 pm

As you'll see from your research and the various discussions on this site, there are differing schools of thought about having a stem cell transplant at all, let alone having more than one. My oncologist explained to me his point of view that it was risky to have more than one, and I agree with him, but I have friends on this site who have had more than one.

For myself, I wouldn't consider a second one unless I had no other options. I was in relatively good health when diagnosed, achieved a near complete remission from the induction therapy, and was incredibly ill from the SCT. But, I achieved a complete remission with the SCT, and stayed in CR for two years. My myeloma is still at the MGUS stage, creeping back at a snail's pace, and I can't imagine going through the SCT again given I'm at such a low level.

[Mark]

Re: Am in complete remission - do I need second transplant?

by Mark on Mon May 12, 2014 6:59 pm

Hi Stoev67,

As darnold mentioned different doctors have different opinions on this. I have never heard of doing one a year after the first while in CR. I believe the general consensus on a tandem auto is:

"Double or tandem autologous HSCT has been shown to be superior to single autologous HSCT in patients who do not attain at least a VGPR.31 It is not certain whether tandem autologous HSCT up-front is superior to a single transplantation followed by second autologous HSCT after disease progression. With the use of novel agents and consolidation after transplantation, new studies will help to determine the role of tandem autologous HSCT."

http://asheducationbook.hematologylibrary.org/content/2013/1/496.long

Mark

[Matt's wife]

Re: Am in complete remission - do I need second transplant?

by Matt's wife on Mon May 12, 2014 10:54 pm

Antelope1225, I'm curious about the results that you posted. Can you share what your m-spike was in 2012, 2013, and on May 5, 2014 as well? I'm also wondering if you find that you're consuming more red meats by following your new diet? Many thanks and I'm glad that you've seen such positive results!

[Cheryl G]

Re: Am in complete remission - do I need second transplant?

by Cheryl G on Mon May 12, 2014 11:01 pm

While I agree with the bottom line of the advice that you've passed along, Mark, I think you need to throw in a couple of disclaimers with that quote. At least one of the disclaimers are the kind you think myeloma specialists should generally include with articles they publish.

First of all, the ASH education article you quote from was written by Dr. Philip McCarthy at Roswell Park. I have a great deal of respect for Dr. McCarthy and his work, but, in all fairness, it bears noting that he's "Director, Blood & Marrow Transplant Program" at Roswell Park.

Do you think that might influence his thoughts on tandem transplants?

If you don't, then consider this second point. The study he cites in support of tandem transplantation was published in 2003. At that time, the only novel myeloma agent that was seeing use was thalidomide, and even it wasn't being used all that regularly.

In other words, the study he is using to support his statement is not just more than 10 years old, it's from a time period when the available treatments for myeloma were very different from what they are now.

[dnalex]

Re: Am in complete remission - do I need second transplant?

by dnalex on Tue May 13, 2014 1:17 am

Save your transplant as a possible option, should you ever relapse. The question to ask your doctor now is what possible benefit he sees from doing another transplant at this time. Has he measured minimal residual disease in your BM? Are you MRD positive or negative?

It's fantastic that you are in CR, and best wishes for staying there indefinitely!

[Mark]

Re: Am in complete remission - do I need second transplant?

by Mark on Tue May 13, 2014 8:34 am

Hi Cheryl G,

What makes you think Dr. McCarthy "supports" tandem transplants? Based on what he wrote, he would not have recommended one in this case. He cites a study (not someone's opinion) that shows a 2nd to be helpful for patients that fail to get a CR. The principles learned in older studies do not become invalidated if a new therapy becomes available.

Note this is from the American Education Series published in 2013. ASH is the well respected American Society of Hematology. It is also a peer reviewed paper meaning both the authors and the other doctors that reviewed the paper believe the available studies back up what is being written. This is different from an internet marketing video. Where would you recommend getting information on this topic?

I would point out that I gave no advice. I simply put up a link to the most recent edition of the ASH Education Series.

Mark

[Cheryl G]

Re: Am in complete remission - do I need second transplant?

by Cheryl G on Tue May 13, 2014 11:45 am

Hi Mark,

You make a fair point. I may have read too much into Dr. McCarthy's statement.

However, when I read a statement like

"It is not certain whether tandem autologous HSCT up-front is superior to a single transplantation followed by second autologous HSCT after disease progression",

I assume that the person making the statement is by default in favor of at least upfront transplantation, and that they also consider upfront tandem transplantation a perfectly reasonable option.

That's why I noted that Dr. McCarthy seems to be relying on studies that are more than 10 years old to support his perspectives.

As to your statement "The principles learned in older studies do not become invalidated if a new therapy becomes available", I don't think that's true.

If you look at a group of patients today who has achieved, for example, at least a VGPR in response to their initial therapy, you'll find the patients are not the same as those that achieved a VGPR 10 or 15 years ago. In the more recent group of patients, a much larger share of them are likely to have achieved a CR, or even sCR.

Also, although I can't point to a specific study that demonstrates this, I suspect that a CR achieved with today's initial treatment regimens, which almost always include novel agents, are actually longer lasting than a CR achieved with older, chemotherapy-based regimens.

I'm well aware of what ASH is and what their education publications are. I also realize that a peer review process is involved in the selection of speakers for the education presentations. However, although this may be a technical point, I am not sure that the publications that accompany the education presentations are themselves peer reviewed.

More broadly, I did not realize that the concerns you have expressed in the past about financial incentives influencing what myeloma specialists write or say were meant to apply only to statements made in non peer-reviewed settings. If that has been what you have meant to say in the past, then I apologize for misintepreting your statements.

[antelope1225]

Re: Am in complete remission - do I need second transplant?

by antelope1225 on Tue May 13, 2014 2:35 pm

Hi Matts Wife.

I don't know what my M-Spike was - I only get a copy of my labs if I ask for it and I only had a couple of 24 hour urine specimens.

I don't eat a lot more meat, but I eat a lot more vegetables. I have a normal portion of meat and a cooked vegetable and salad for dinner every evening. I have eggs and sausage for breakfast and left over dinner for lunch. I was worried that this would hurt my kidneys but felt that since I have blood work every month, I would be able to tell if I was causing any damage - my kidney numbers are MUCH better.

I got a glucose meter so I could see what affected my blood sugar. Some articles said (this is confirmed by my experience) that a person with cancer is dealing with inflammation inside and has a reaction to eating sugar and carbs much as a person with diabetes. I am 5 ft 3" and 126 pounds - so you would not guess that I would act like a diabetic, but on Sunday I took communion (tiny bit of cracker and juice) and I could not get my blood sugar down below 100 for the rest of the day.

I am not sure if I am more sensitive to carbs now that I don't eat them as much, or if my blood sugar was bouncing up and down 60-80 points several times a day before I started monitoring it.