a typical course of hyperbaric oxygen treatments increases by eight-fold the number of stem cells circulating in a patient’s body-this therapy can be beneficial for collection as well as engraftment
Hi David- We have communicated in the past. I was diagnosed with MM in Jan-Feb 2019 I have been in complete remission for about a year on maintenance revlimid, dietary changes, supplements. Trying to keep a healthy lifestyle. Upon diagnosis I had a 14:16 translocation. I am writing to you today to ask about an ASCT.
You mentioned to me a while ago about harvesting my stem cells. My oncologist never brought it up so I brought it up to him….referrals made. I have spoken to 2 MM specialists who recommend an Autologous Stem Cell Transplant (ASCT). So I am going for the harvesting process next week.
They are talking stem cell transplant sooner rather than later. However, my husband passed away in Nov 2020, I am considering downsizing and moving. I am just starting to get my life together a bit.
I am still in complete remission on a revlimid wash for 3 weeks (have been on revlimid for a long time although for the last year on a reduced dose) for the harvesting and feeling very well.
I feel I should wait to have the transplant. Huntsman Institute in Utah will store my stem cells for 5 yrs free of charge. I am thinking I can prolong my remission naturally and stay on an even smaller dose of Revlimid or possibly Pomalyist.
Next week I do preliminary testing and start injections of Neupogen…they are taking into consideration a longer time may be possible to collect enough cells because of being on the Revlimid for 2 yrs.
Interestingly my local oncologist once told me he compared MM to a chronic disease like diabetes….meaning when one med stops working there are many other medications to try. I was a bit surprised he did not recommend the SCT sooner and I approached him after you encouraged the harvesting. Linda
First and foremost, I am sorry for your loss. I am certainly not a psychologist but consider talking to someone- you are juggling a lot of stress now between your loss, your MM, not to mention an ASCT and possibly downsizing. My wife and I downsized once our son went to college. The move is a pain but life sure is easier now that we live in a condo!!!
Several issues for you to consider-
It is great to read that you remain in CR from your diagnosis of MM in early 2019. I agree with you that low-dose maintenance Revlimid combined with anti-angiogenic nutrition, supplementation and lifestyle therapies should deepen and lengthen your remission. The article linked below talks about your 14:16 translocation.
- This genetic abnormality is rare and not well-studied
- Your CR status already is a positive prognostic indicator
- According to the study, an ASCT may result in a longer overall survival
I will be direct. A growing number of studies and MM specialists question the benefit of the ASCT for MM patients. However, because your translocation puts you in a different group of MM patients, it appears that you may benefit from an ASCT.
Personally, I would harvest your stem cells now while you are in CR and wait until you begin to relapse before you have an ASCT. However, this decision (sooner or later) is up to you and your oncologist.
I will add that you will need a caregiver just to manage routine daily life once you complete an ASCT.
Regarding your harvesting of your stem cells. While neupogen will help, please consider hyperbaric oxygen therapy to stimulate your body’s production of stem cells. See the article linked below.
Let me know if you have any questions.
Hang in there,
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
“Lastly, in patients who were eligible for autologous stem cell transplantation (ASCT), the upfront transplant prolonged the median PFS compared to standard chemotherapy without ASCT, as did the use of maintenance therapy. Another factor associated with prolonged PFS was the achievement of complete response (CR), or better, as best response:
- ASCT vs no ASCT: 36 vs 17 months (HR, 0.5; p = 0.036)
In summary, according to this analysis, almost every patient with t(14;16) presented with at least one other high-risk characteristic at diagnosis, which are associated with poorer survival outcomes.
These results are in line with those reported recently by Goldman-Mazur et al.,3 in the only other study with an equally high sample size of patients with t(14;16) (N = 223). In this multicenter retrospective study, Goldman-Mazur et al. found that approximately a quarter of patients with t(14;16) initially present with renal failure. After a median follow-up of 4.1 years (95% CI, 3.7–18.7), the median PFS and OS were 2.1 years (95% CI, 1.5–2.4) and 4.1 years (95% CI, 3.3–5.5), respectively. However, the OS significantly decreased in older patients (age > 60 years) and patients with R-ISS 3 disease compared to the rest of the patients included in the study. It should be noted that in this study, as well as in Mina et al.,2 results were not compared to a matched control group of patients without t(14;16).
The question remains then, whether it is possible to link this unfavorable prognosis solely to the presence of t(14;16) or not. Moreover, the decision to include t(14;16) in the R-ISS was based on the International Myeloma Working Group (IMWG) molecular classification,4 which initially used the data from only two small studies. Although its significance was validated later in larger cohorts, t(14;16) was always analyzed along with other CAs.
On the other hand, incorporating novel agents into first-line of therapy, and using some clinical protocols specifically for patients with a high-risk profile (i.e., double ASCT), it might be possible to improve the outcomes for patients with t(14;16), masking the previously described negative effect of this CA.
Taking everything into account, is it safe to say that there is a growing need for a revision of the Revised-ISS to address how to improve the evaluation of patients diagnosed with MM in the era of novel agents, according to their cytogenic profile.
“The actual treatments (HBOT treatments) were easy. He said that his ears would feel pressure, like while flying in an airplane. The chamber was clear, and he could watch TV during his 90 minute sessions…
Dave’s WBC count jumped from below 2.0 to over 13 during the night! They ran the ProCOUNT test, and Dave’s was at 50 million cells available for collection! The collection doctor said that in 20 years of doing this she had never seen anyone with his extensive radiation history with those numbers!”
“According to a study to be published in the American Journal of Physiology-Heart and Circulation Physiology, a typical course of hyperbaric oxygen treatments increases by eight-fold the number of stem cells circulating in a patient’s body. Stem cells, also called progenitor cells are crucial to injury repair. The study currently appears on-line and is scheduled for publication in the April 2006 edition of the American Journal…
“This is the safest way clinically to increase stem cell circulation, far safer than any of the pharmaceutical options,” said Stephen Thom, MD, Ph.D., Professor of Emergency Medicine at the University of Pennsylvania School of Medicine and lead author of the study. “This study provides information on the fundamental mechanisms for hyperbaric oxygen and offers a new theoretical therapeutic option for mobilizing stem cells.””