Stem Cell Transplant (ASCT)- Myeloma- Ugly Side Effects

Hematopoietic stem cell transplantation (ASCT) is aggressive therapy for multiple myeloma patients and can bring serious short, long-term and late stage collateral damage aka side effects.

I was diagnosed with multiple myeloma (MM) in early 1994 and underwent a hematopoietic stem cell transplant (ASCT) in December of 1995. The years following my ASCT have been filled with long-term and late stage side effects caused by my ASCT.

While an autologous stem cell transplant has a place in the treatment of multiple myeloma, painful experience has taught me that this aggressive, toxic therapy can damage the patient’s brain, heart, endocrine system, eyes, just about all his/her organs.

Your oncologist probably won’t explain to you all of the life alterning side effects of ASCT. In short, an ASCT should not be used unless it is absolutely necessary.

More importantly, it is an open question if the advancements of modern MM therapy has eliminated the need for stem cell transplantation.

In other words, if newly diagnosed MM patients can achieve minimal residual disease (negative) status, or achieve a solid response to his/her induction therapy, an ASCT might not result in longer overall survival on average.

Why would anyone undergo more aggressive, toxic chemotherapy if he/she wasn’t sure of achieving a longer overall survival (length of life)?

There are two sure events that should cause the newly diagnosed MM survivor and caregiver to think long and hard about having an ASCT following induction therapy. And those two events are

solid response to your induction therapy-solid meaning VGPR, CR, sCr, MRD pos and MRD neg.-

experiencing extensive side effects from your induction therapy- if you have to live through skin pain, anemia, nausea, etc. there is a good chance that you are sensitive to chemo and therefore will be sensitive to aggressive, highly toxic therapies that make up the ASCT chemotherapy.

Have you been diagnosed with multiple myeloma? Has your oncologist recommended an ASCT? What was your stage and symptoms at diagnosis? What are your goals?

Scroll down the page, post a question or comment and I will reply to you ASAP.

Thank you,

David Emerson

MM Survivor
MM Cancer Coach
Director PeopleBeatingCancer

Long-term health impacts of hematopoietic stem cell transplantation inform recommendations for follow-up

“However, hematopoietic stem cell transplantation (HSCT) survivors are at risk of developing long-term complications, such as

endocrinopathies,
musculoskeletal disorders,
cardiopulmonary compromise and
subsequent malignancies.

These complications have a direct impact on the morbidity and mortality experienced by HSCT survivors. Two-thirds of HSCT survivors develop at least one chronic health condition; while a fifth develop severe or life-threatening conditions.

HSCT patients who have survived for at least 5 years post-transplantation are at a fourfold to ninefold increased risk of late mortality for as long as 30 years from HSCT, producing an estimated 30% lower life expectancy compared with the general population…”

Quality of life and mood predicts post-traumatic stress disorder after hematopoietic stem cell transplantation

“In this study, we demonstrate that a significant proportion of patients undergoing HCT report PTSD and depression symptoms at six months post-HCT, further illustrating the substantial psychological burden endured by this population…”

Endocrine disorders during the first year after autologous stem-cell transplant.

“In this prospective study we investigated early (at 3 months) and late (at 12 months) endocrine dysfunctions in 95 consecutive autologous stem-cell transplant recipients (47 men and 48 women) aged 16 to 55 years. The functions of the hypothalamic-pituitary-gonadal/thyroid/adrenal/somatotroph axis were evaluated…

This study documents frequent endocrine disorders during the first year after autologous stem-cell transplant. Despite a tendency to improve, in more than half of the cases, the complications persisted for more than 1 year. Therefore, to diagnose and correct early and late endocrine dysfunctions, endocrine screening is required during the first year in all patients undergoing autografting.”

Second malignancy following high-dose therapy and autologous stem cell transplantation: incidence and risk factor analysis.

” Patients who have undergone HDT and AHSCT are at significant risk for developing a second malignancy and should receive indefinite follow-up…”

Complications of Autologous Stem Cell Transplantation in Multiple Myeloma: Results from the CALM Study

“Background: The main goal of this post hoc analysis of the Collaboration to Collect Autologous Transplant Outcomes in Lymphoma and Myeloma (CALM) study was to evaluate the rate of

short-
and long-term infectious
and non-infectious complications

occurring after ASCT in patients with multiple myeloma (MM).

Methods: The analysis included all patients with MM from the CALM study who underwent ≥1 ASCT. The primary endpoint of the analysis was to determine the rate of infectious and non-infectious complications after ASCT and to compare them in three time periods: 0–100 days, 101 days–1 year, and >1 year after the first transplant.

Results: The analysis included a total of 3552 patients followed up for a median of 56.7 months (range 0.4–108.1). Complication rates decreased with the time from ASCT with 24.85 cases per 100 patient-years from day 0 to 100 days after the transplant, and <2.31 cases per 100 patient-years from the 101st day.

At 100 days after ASC T, 45.7% of patients had complications, with infectious events being twice as frequent as non-infectious complications. Bacterial infections (6.5 cases per 100 patient-years, 95% CI: 6.1–7.0) and gastrointestinal complications (4.7 cases per 100 patient-years, 95% CI: 4.3–5.1) were the most common early events.

The pattern of complications changed with time from ASCT. The presence of complications after ASCT was not associated with overall survival.

Conclusions: Our data provide a solid basis for comparing ASCT-related complications to those caused by emerging treatments in multiple myeloma, such as CAR T-cell therapy and other immunotherapies.

Wayne says last year

I was diagnosed in April of this year. Presently taking Revlimid daily and velcade and Dara once a week. On a 21day schedule. They are talking about being a good candidate for SCT in October. What I’ve been reading lately has me a little confused. I’m feeling OK but not great. Back is always sore and stiff. Breathing has been hard especially after a small walk. My blood counts are improving every week. Just want to make sure that I’m doing the right thing. I’m 65 and still want to work a little and play some golf.

Sylvia Killman says last year

I was diagnosed October 2020, 4 sessions of RVD, then SCT March 2021. Full response June 2021. I’m on no maintenance, my specialist said ‘why put more poison in your body if it not necessary, we’ll keep a close eye on your numbers and re-evaluate if things change’
I was happy with his decision. I am a little concerned though because my chemo brain seems to be getting worse and I get very tired and fatigued, I also have lots of pains throughout my body and not just in my joints

David Emerson says last year

Hi Sylvia-

I replied to you via email.

Hang in there,

Kathryn Guillaum says last year

At my age, I may not be eligible for SCT anyway, and there is also the insurance issue. However, it is the one treatment I do not want unless it’s a last resort. All the new findings coming out and how soon there may be a treatment that does not use Chemo at all. I hope SCT are all but eliminated. I’m sorry you had to experience the effects and did research to find out the ….double down poison ( my words ), it can be. I keep harping on my case; I will not be privy to any new advances because of insurance.

My guess is that you won’t need to have an ASCT Katheryn. Hang in there. David

Georgi Georgiev says 4 years ago

Dear David, I was diagnosed with Primary Plasma Cell Leukemia in August, 2019.
Prescribed therapy – 4 cycles x 21 days VELCADE, REVLIMID, DEXAMETHASONE.
After the 1.cycle the FLC count decreased from 3600 to 36 & after the second down to 10 (within the normal range). Same happened to FLC ratio. Same happened to ASAT & ALAT liver counts (also from elevated down to normal). Protein values are in the normal range too.
The end of the 4.cycle is 2 weeks away & a sample of the bone marrow will be taken & analysis done.
Here in Switzerland the oncologists recommend to undergo immediately an AUTOLOGOUS STEM CELL TRANSPLANT no matter the result of the bone marrow analysis.
I am asking myself the question – is it appropriate to have immediately an ASCT even if I have Complete Remission (CR) or Stringent Complete Remission (sCR) acc. to Plasma Cell Leukemia Response Criteria after the bone marrow analysis is out?
Your opinion will help a lot.
Thank you for answering!

David Emerson says 4 years ago

Hi Georgi-

I would like to ask you some questions to better understand your situation. I will contact you directly from my email.

thanks and hang in there,

Thanks, David!
BR Georgi

Recently Diagnosed or Relapsed? Stop Looking For a Miracle Cure, and Use Evidence-Based Therapies To Enhance Your Treatment and Prolong Your Remission

Stem Cell Transplant (ASCT)- Myeloma- Ugly Side Effects

Hematopoietic stem cell transplantation (ASCT) is aggressive therapy for multiple myeloma patients and can bring serious short, long-term and late stage collateral damage aka side effects.

David Emerson

Recommended Reading:

Long-term health impacts of hematopoietic stem cell transplantation inform recommendations for follow-up

Quality of life and mood predicts post-traumatic stress disorder after hematopoietic stem cell transplantation

Endocrine disorders during the first year after autologous stem-cell transplant.

Second malignancy following high-dose therapy and autologous stem cell transplantation: incidence and risk factor analysis.

Complications of Autologous Stem Cell Transplantation in Multiple Myeloma: Results from the CALM Study

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