Sorry for creating a new topic but I couldn't figure out where to put this query. What is the optimal timing for harvesting stem cells? We have gotten contradictory advice from our oncologist. Should stem cells be harvested as soon as CR is obtained, especially if that is within 6 months of diagnosis? Is there value in waiting a few months to consolidate the CR (our onc says if my husband keesp on the thal/dex his bone marrow will only improve - but already he is at 1-2% plasma cells,and no M protein). He was diagnosed early March, so already we are five months post DX. Is there a concern about cell mutation with the passage of time? Already the bone marrow biopsy report mentions "mild changes, like mild hypocellularity and megaloblastoid NRBC changes" which "may be due to dilution effects and/or chemotherapy induced changes." Is that something to worry about? Since we are trying to arrange harvesting in the US, timing is a big deal: we have to travel, probably leave our kids behind, stay for a few weeks (Dana Farber told me the harvesting procedure takes a month!) Any input about optimal timing for harvest is gratefully accepted. Thanks.
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When I went through harvesting in 2000, there was concern about suppressing the stem cell production if you were on thalidomide longer than six months. I don't know if that is still true today. I suggest you consult over the phone with a transplant oncologist at the site where you plan on harvesting. Remember transplant oncologists do nothing but transplants-these docs are different from the non-transplant oncologists at the same location. So ask to speak to a transplant oncologist. If they have a problem with extended use of thalidomide they will tell you. If they do have a problem with extended use of thalidomide it is likely based upon problems they have had experienced with other harvest patients so it is knowledge you want to take to heart.
Terry
Terry
Terry's comments make sense- "I suggest you consult over the phone with a transplant oncologist at the site where you plan on harvesting."
After reading the lists for years, my sense is that harvesting when the myeloma is at its weakest or lowest point.
David
Thanks Terry and David. I haven't yet managed to talk to a transplant oncologist but I did manage to get some feedback from Dr. Anderson, via his assistant, who says that both harvesting and transplant should happen "sooner rather than later." I belive we need to move on the harvesting and we already have it tentatively booked at Dana Farber - but are waiting on our insurance, so that may all fall through. (How much does harvesting cost, does anyone know?)Meanwhile, in my research, Ifound a 2001 study that had some relevant comments about transplant. It says, "achievement of CR as a surrogate marker of long survival was more important than the method used in reaching this goal. Not clear is whether patients already in CR with initial therapy gain further with intensification." ("Impact of complete remission with intensive therapy in patients with responsive muyltiple myeloma," Bone Marrow Transplantation, May 2001, Vol. 27, No. 10.) I know it is from 2001, so may be outdated. But parallel to arranging harvesting, i am trying to find as much info as possible about transplantion after achieveing CR through induction therapy. If my husband is already in CR, will transplant give him more? will it keep him there longer? In his case, transplant could be quite dangerous, because he has an infection in his surgical wound site that just won't heal. (the surgeon gave him a ten day grace period to try another antibiotic cream, and then wants to put him under the knife AGAIN! I supect the main culprit is Dex, but since our onc doesn't want to take him off the Dex, it is a vicious circle. Although my husband thinks he will unilaterally reduce the drugs after the next electrophoresis test results, assuming CR holds.)
I doubt if anyone would do harvesting with an active infection, and if they would, I wouldn't do it. Your WBC goes to zero, if only for 3 days. If you plan to harvest, I would suggest you get aggresive discussing with an infection specialist adding a broad spectrum oral or IV antibiotic. If you get the IV antibiotic suggest not getting it in a hospital-too many antibiotic resistant bacteria. From my experience, you can go off the dex for 2-3 weeks to clear the infection, and then go back on it for 2-3 weeks before the transplant. I was off everything for 3 weeks before harvesting, but my M-spike never was lower than 400 mg/dL even before I stopped the 200 mg thalidomide and 40 mg pulsed dexamethasone. The infection has to be completely completely gone in my opinion before the harvesting, no ifs ands or buts-it is just too risky.
Terry
I didn't realize that infections were a problem for harvesting too. Thanks for the warning. Things are only getting more complicated! The surgeon wants to operate a third time - he thinks a piece of suture that has not been absorbed is causing the problem. My husband is reluctant to go under the knife again. He's already been on IV antiobiotics, was on a more than a month of oral antibiotics, and was doing ok till the last Dex dose.... the infection basically dies down each month and then flares up around the Dex dose. So my concern is, is the infection really gone? or just dormant? this scares me in the context of transplant.
Lisa,
Does your husband have a fever, and is that why you think his infection is flaring up? If there's no fever, I'm suspicious of DEX, because it can produce some of the same effects, like thrush, as too many antibiotics. (If anyone wants to add to this this information, please do so. I know just a little about DEX.) I'm wondering if all of the antiobiotics your husband has taken have caused an imbalance in his intestinal flora. When your husband takes DEX, he reacts all over again, just as if he were taking more antibiotics. If I were in your husband's situation, I would take probiotics two times a day and avoid simple sugars, cheese and vinegar for a couple of months to see if that makes a difference. And, if things settle down after two months, I would continue to take probiotics indefinitely every day at least once a day. Taking too many antibiotics without the benefit of probiotics can really create havoc in our intestines and make us feel terrible all over, from head to toe. Most conventional doctors are unaware of the need for probiotics and do not recommend them to patients who have been taking large doses of antibiotics.
Cathy
Thanks, Cathy. The infection is manifested as weeping pus in my husband's surgical wound site, and a sort of abscess. No fever. We are 100% sure it is the Dex causing it (even though our oncologist tries to deny it - as if he feels personally offended that we say anything negative about HIS treatment protocol!)But, it is definitely an infection. My husband had to have it opened up AGAIN today to clear out the pus (he did it under local anesthetic, this time, which was a relief). But now he is on ANOTHER month of antibiotics.Ugh. He takes probiotics 2-4 tims a day, and has been almost since diagnosis, but that isn't helping. He doesn't have cheese or vinegar, and he has no simple sugars other than what is found in fruit and vegetables (nothing processed at all, no wheat products, no sugar). We've upped the dose of probiotics again. He also drinks kefir once in a while, and I mix liquid probiotics with aloe vera juice for him. We can't avoid the antibiotics because we need to clear the infection to move on harvesting. I personally think he should stop the Dex, especially being in CR. I don't understand the oncologist's refual to admit that Dex plays a role in infections. It's not exactly a secret, after all; it's a listed side effect. By the way, when I gave the onc a list of the supplements my husband is on, he questioned the probiotics (actually, first he asked me what probiotics were!!!!!). He said that they were irrelevant and would not do anything for my husband. Fine. he can think that if he likes, but I am sure my husband would be in worse shape without the high doses of probiotics he has been taking for months.
Sorry for not responding sooner but I was out of town. I believe the common sense answer is getting rid of the infection regardless of whether you harvest. As long as you have the infection hanging around you never know when it is going to rear its ugly head. When I had pneumonia several years ago, I was in the hospital and off thalidomide and dexamethasone for two weeks. I was being treated by an infection specialist in the hospital who prescribed two doses of colony stimulating factor (Neupogen) which boosted my white count to 14,000 which cleared the infection. Two different IV antibiotics taken for the previous week were not working. When I saw my oncologist four weeks later, my m-spike was not much different from the previous month.
Terry
Terry, that's very interesting. So, if my husband harvests without chemo, just with neupogen, could that actually be safe even with an infection, and could it actually help the infection?
We are trying to get it under control in any case. And I really really think he ought to stop the Dex. I don't understand the oncologist's reluctance to attribute the infection to Dex.
Lisa,
How did the surgery go? You probably will have to give it 6 weeks for the surgery to completely heal and determine if the infection is clear. My advice, is if the infection doesn't heal completely completely see an infection specialist and give those decisions on dex, etc. over to him or her. I only use my oncologist concerning decisons concerning their expertise, and even then I get a second opinion from the Mayo. It is interesting, my local oncologist doesn't want to hear anything from the Mayo, so I don't share. If I have a question about my heart, I see a cardiologist, anything related to my health, my Internist, my teeth or gums, my denist. In my opinion, you are my likely to get the best and latest thinking by going to a specialist who actually works in the field, and there is too much at stake, your life.
I think I forgot your most important question, no you can't combine clearing the infection with the harvesting even if they would both use Neupogen. If you go into harvesting with any infection in your body, even a tooth cavity (see a denist and get a complete tooth/jaw scan for cavities before harvesting-all cavities must be filled-per Mayo), the odds are not good that it is going to be an acceptable outcome. Clearing all infections has to come first!
Terry
Thanks for input, Terry. Well, we saw the surgeon again today. The infection is just not clearing. He wants to put my husband under full anesthetic and go in again, properly this time. (The last one was under local). My husband is resisting but we have to deal with this thing! The surgeon says they will want the infection clear before harvesting. Our oncologist, whom we spoke to on the phone today, says that the infection is just a local skin thing and won't affect the harvesting. However, at this point I'm not inclined to trust his opinion. Too many of the things he has said have been contradicted by other doctors we've consulted. (Also, today he told us that he has never in his entire career had a patient develop PN from Thal. This doesn't sound right to me unless it is just that they have all gone on to early transplant and weren't on Thal for very long. He lied in the past about osteonecrosis of the jaw, so I'm taking his statement with a very large grain of salt). At this point I've gotten input from four myeloma doctors who graciously and generously answered my email (or sent an answer via an assistant). The consensus I've gotten from them all is, harvest as soon as possible. Our oncologist here wants us to wait a few months and keep on with the drugs at the same dosages - he says that even though my husband is already in CR his bone marrow "will only get better". But since the myeloma experts I contacted all think we should harvest as soon as possible, I'm inclined to go with their opinions, not our doc's. The answer about when transplant should happen is more mixed, with two expert doctors favoring transplant as soon as possible, and the other two saying we can wait. The most recent response I got was perhaps the most measured, in ths sense of acknowledging the fact that they just don't know everything for sure, yet also the most reassuring, in the sense of making me feel that we can keep options open without missing the boat. This doctor told me, "I typically tell patients that, as far as we know, delaying a transplant from CR1 to the time of early first relapse, does not compromise its effectiveness. Thus, unless there are special circumstances (such as advanced age), I think it is fine to collect stem cells in first CR, and either stop therapy completely or stay on some lower dose maintenance schedule (again, a controversial area)." He also told me that there is evidence that patients who achieve a CR with chemo alone do as well as those who achieve CR after chemo plus transplant. But, he said there are other studies that are less clear, and that they need a randomized trial to determine the issue for sure.
Lisa-
" i am trying to find as much info as possible
about transplantion after achieveing CR through induction therapy. If my
husband is already in CR, will transplant give him more? will it keep him there
longer?"
I have no person experience with this but my general understanding is that if you have good results from induction therapy that you can then hold off on a bmt until you need to.
Mostly what I've been told is that earlier is better, and transplant while in CR is the best possible timing. But is that correct? There seems to be enough debate about the matter than I'm not sure. Destroying one's immune system isn't something to be done lightly, even though the doctors i've spoken to have sort of down played auto transplant as no big deal.If only we all had crystal balls and could look into the future.
Lisa,
Having gone through auto transplant, I can tell you although it is not easy, it should remain one of the options you should be able to choose from when other options stop working. For me it bought me seventeen months of stable diseaase with no drugs required other than my once/month Aredia. A lot can be learned about myeloma in seventeen months. Our game is buy enough time to find the next treatment and hopefully a treatment that either cures or turns our disease into a treatable one.
Terry
I have no doubt that transplant should remain an option. That's why I'm pushing to harvest as soon as possible. But the timing of transplant is a different matter. If my husband is in CR should he really do a transplant? It just feels counterintuitive to give up CR and steadily increasing health. I think our inclination is going to be to see how far this current CR will take us. But my husband will have to be the one to make the final decision, as it is his body and his life at stake.
Lisa-
Though a bmt will remain an option for your husband and while there may be studies that point to longer remissions from a bmt sooner rather than later, I think that it is important to consider not just "event-free survival" (time from therapy to an event) and compare it to both quality of life (healing first) and total life span. David
Here is my opinion. Harvest the cells early once your level of disease is low (blood and bone). Try to collect up to 10 million stem cells, enough for two easy transplants ( 5 million cells makes for an easy transplant), since you may never be able to harvest again. After that I think you can wait for a transplant as long as you remain healthy (normal/near normal RBC, WBC, platelets, IgA, IgE, IgM. As your health starts to slip as indicated by these factors your ability to easily comeback from the transplant becomes more difficult and takes longer. I had my transplant seven months after diagnosis and I was back working full time one week after discharge from transplant. I am not suggesting this is typical, but you now know it is possible.
Terry
I got input from Dr. Kyle who told us to harvest as soon as possible, but that we should not even consider SCT until the issue of infection is totally resolved.
I got a response to my question about harvesting from Dr. Rafael Fonseca and Mayo CLinic Scottsdale, and he told me that stem cells should be collected asap. He also said, "It is OK to take a break after Thal Dex and let him recover. Most of us do not consider the responses to Thal Dex very durable (even in CR) so that is why it has been used mostly pre SCT, although it can be used as sole treatment too (I do not use it much in that way)" So, more things to think about. I don't know what he means by durable. The second opinion doctor we saw here in Cyprus told me that both drugs and transplant only give remission for about a year. (That doesn't entirely jive with what I've gathered from the lists, though). In any case, Dr. Fonseca confirmed that doing transplant with an active infection is a bad idea. We just found out that our insurance does not cover us in the US, so we will have to arrange harvest in the UK, probably with Gareth Morgan, who is the doctor most highly recommended by everyone I've asked. That means we'd have to go to the UK for a transplant, which wouldn't be easy (we'd be on our own, in an unfamiliar system). But, it is a lot closer, which is a large advantage.
Lisa, I asked my husband's transplant surgeon that question, because Dave was also in CR after Thal/Dex. He said that without transplant, he would probably come out of remission within a year.
Unfortunately, most people have to stop thal/dex because of physical side effects. Even if the remission does not last all that long..if the patient did not have the side effects, he or she could just start on it again. In fact, in some ways, thalidomide alone is a lot better, and one caregiver told me here sister had been off and on thalidomide alone for more than seven years..and the only side effect was slight PN..but certainly better than being six foot under.
According to Dr. Berenson the average remission of a stem cell transplant is 18 months, according to others 24 months. Is that a durable remission?
I was in remission by very means except the serum freelight test for almost a year following thal/dex. If I did not have severe mental side effects, I would have happily gone back on it..I experienced no physical side effects.
This will not happen with a stem cell transplant..you definitely will experience physical side effects, and possibly mental ones too.
Alex Maas
a.maas@oc.nxet
Thanks. I am going to do some research on lenght of drug-induced remissions (as opposed to transplant induced remissions). It is so hard because we can't know ahead of time how it will go. Sure, we can hope the natural stuff will keep him in remission, but we don't really know.A side question: what is molecular remission as opposed to other kinds of remission?
Lisa,
When I wss diagosed with myeloma and I identified the Mayo Clinic as the place I wanted to have my transplant, I was turned down by my insurance company. They did assign a nurse advocate to me who with my help researched with me why I should be allowed to go to the Mayo. She wrote a letter on my behalf to the insurance exception board. The things we identified were: The Mayo had a specific myeloma protocol for transplant and the number of transplants/yr the Mayo performed. Six weeks later, the insurance company approved my transplant at the Mayo. Insurance companies for "rare" diseases like myeloma must approve a hospital that is qualified.
Terry
Our insurance company has made a flat out decision that they will not pay for any treatment in the US, period. They say US medical costs are unreasonable. They will fund us anywhere else in the world (literally) we want to go. But not the US. At least that is the current information I have.
We are hoping that the hospital in London has medical housing available to patients, because our insurance won't cover lodging unless it is hospital-based. A month's stay in London is not a bill I would like to pay, especially since it is unlikely we're going to be hitting the theater and the museums!
Lisa-
My sister and her husband stayed in an apt. (flat) while in London and reportedly saved money when compared to a hotel. I can get info if you would like. David
Lisa,
If you truly would like to consider a US center try calling the billing department at a US center. They may willing to provide a fixed cost estimate directly to your insurance company. Then get a cost estimate from the London hospital. You May find the insurance company is prejudice and doesn't know what they are talking about.
Different subject, I stayed at an outpatient transplant house run by Nuns just two blocks from the Mayo center. Their charge was zero to a maximum of $35/day in 2001. I highly recommend outpatient because you don't get exposed to antibiotic resistant germs like at a hospital and you have the support of a lot of geat transplant patients-great for the morale.
Terry
Terry, these are excellent suggestions. Thanks. David, can you let me know more info about flats in London? I spoke today to the Royal Marsden Hospital and their hospital housing is for parents of pediatric patients and we'd be unlikely to find a space. Meanwhile our plans are on hold in any case because of the infection in my husband's wound site which is continuing to act up. Surgeon wants to operate yet again, under full anesthetic, to deal with it. That would make the fourth operation since February. My husband is reluctant, but it's been five and a half months since diagnosis, he is still on the Thal/Dex, and we need to move on harvesting while it is still early enough and the numbers are good. Since day one the needs of my husband's spine have been in competition with the needs of his cancer (and the surgeon and the oncologist have been arguing about whose treatment should trump). So many complications! And then trying to arrange this international medical care on top of everything else. I was hoping we could manage the harvesting before school starts for my kids and we have that pragmatic complication as well to deal with.
Remember that 17% from the Mayo clinical report that get Deep Vein Thrombosis (DVT) with the Revlimid Dexamethasone combination, well you can add me to the list. Blood clot on the left leg from the mid thigh to the mid calf! You don't have to worry about missing it, it is quite painfull. I am on low molecular weight Heprin (7.5 mg) for five days- a subcutaneous shot I give my self in the fat of my stomach, no big deal; and cumadin daily forever as long as I am on Revlimid and Dex. OK, what is the bad decison? The bad decision is that I should have started Cumadin at the beginning and avoided the blood clot. I am taking it in my stride, but I have some chance of dying from a pulmonary embolism before the clot is cleared. I spoke to the Mayo as usual. Their comments were their protocol does not start the Cumadin initially because of bleeding concern for their older patients but many centers do start the Cumadin on day one! I believe this is definitely something to talk to your oncologist about if you are on this combination.
Terry
Sorry about your blood clot Terry! I hope it resolves soon. My husband is only on aspirin with his THal/Dex, but also takes fish oil and curcumin.
Lisa and others-
Ever since a blood clot formed due to one of my chemo regimens, I have always wondered if there was anything that I could have done to prevent it. Fish oil, ginko, curcumin, vit e thin the blood but as far as I have read and experienced, it is bromalain (enzyme to help digest food) and nattokinase (enzyme also) which have fibrolytic properties- these enzymes actually break down blood clots. I have never read anything that says that these enzymes prevent blood clots though after supplementing with these enzymes as well as fish oil, ginko, etc. my own chronic blood clot is slowly resolving. I wish that I had been supplementing with these during my own chemotherapy. David
Despite the touting of Revlimid by many mm specialist, this is one drug that Dr. Berenson does not trumpet. He feels it has too many side effects. Stronger mental ones than thalidomide..it effects your bone marrow in a way that thalidomide does not..and has the same physical side effects of thalidomide..but at a reduced percentage of the patient population. Is this really an improvement? Sure if you cannot do thal again..maybe..but I have had tons of private emails from people that just cannot tolerate the side effects of Revlmid.
Also, with thal/dex putting me in the mental hospital, bot the head of the transplant unit where I was going to have my stem cell transplant, who was in charge here of the phase IV Revlmid trial, and Dr. Berenson, who no longer has ANY mm patients undergo stem cell transplants, both agreed that Revlimid would be a bad drug for me.
These two doctors rarely agree on anything, but they agrred on that.
Some other have suggested to me that because it is an analog of thalidomide, a has a structural chemical variation, that I would not have the same problems. I doubt it, and I will listen to the advice of these doctors here, since here is something they can agree on, which they normally never do.
Alex Maas
a.maas@cox.net
Terry-
Your DVT sounds just like mine. Though my clot is approx. 10 years old and therefore referred to as "chronic." I was taking coumadin (did heparain at first in the hospital) for about 18 months but after research decided that I did not want the long term risks. I now take fish oil, enzymes, nattokinase, vit e and ginko and my chronic clot is slowly resolving (based on annual ultrasounds). No more pain, a little swelling. There are others on this list who also subscribe to this thinking. Food for thought.
David
Food and Drug Administration officials said yesterday they are bringing to doctors' attention the potential usefulness of getting a patient's genetic profile before prescribing warfarin, one of the most widely used -- and most dangerous -- drugs on the market.
Variations in the activity of two genes can greatly increase the potency of warfarin, a pill that slows coagulation of the blood and that about 2 million Americans start taking each year. Many continue to take the drug for the rest of their lives.
http://www.washingtonpost...
David, do you have a link to where you can get the genetic test for warfarin? I remember checking into it several months ago. Thank you.
Barbara Pavel
Caregiver, John Pavel
dx 1/03 kappa light chain, comp fx L1 11/02, T5&T7 8/06, T6(kyphoplasty)10/05, various alternative treatments from 1/03-9/06 Started 8/06 - thal 100 mg daily /dex 20 mg weekly, Aredia once a month,coumadin for DVT 3/0
Just started warfarin. Per my Internist who maintains a warfarin clinic in the office, the genetic testing is currently a two week turnaround. If you need warfarin, i.e., you have a blood clot, you need to start warfarin/heprin immediately you would have to stay on heprin for the two weeks until the genetic results came back. Per my Internist, he believes the risk of staying on heprin for two weeks is greater than not having the genetic data. My Internist reduces the risk on not having the genetic data by testing the clotting factor every two days or until control is achieved. He says if they reduce the turn around time on genetic testing results he will use the test.
Terry
Barbara- no I do not have a link to where one can get the genetic test. After so much discussion about dvt's and coumadin, I saw the article and thought the list might be interested. Does anyone else know anything about warfarin/coumadin genetic testing?
http://www.washingtonpost...
"Bleeding complications from warfarin are responsible for about 30,000 emergency room visits a year in the United States. Studies have shown that the risk of a serious bleeding episode -- into the brain or intestine, for instance -- is highest soon after treatment has begun."
I found this link for ordering the genetics test you referenced. It's from Genelex, has a 4-day turnaround and costs $550 - and says it's "typically reimbursed by insurance". We had some severe bleeding issues when my husband was on warfarin after a PE, so they put in a vena cava filter and he's been off warfarin completely since then. He's going in next week for CT scans to check for blood clots and circulation issues and I plan to ask about this test.
http://www.healthanddna.c...
Dianne in Henderson, NV
I will copy/paste Dianne's post again-
I found this link for ordering the genetics test you referenced. It's from
Genelex, has a 4-day turnaround and costs $550 - and says it's "typically
reimbursed by insurance". We had some severe bleeding issues when my husband
was on warfarin after a PE, so they put in a vena cava filter and he's been off
warfarin completely since then. He's going in next week for CT scans to check
for blood clots and circulation issues and I plan to ask about this test.
http://url.b33p.net/BG8YP... Dianne in Henderson, NV
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