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Multiple Myeloma, Sex After ASCT?

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“At diagnosis, (of multiple myeloma) quite a few cancer patients spy Eros rushing out the door. I know I did. For some, eroticism vanishes during or after (ASCT) treatment”

Will all three, MM, sex and Autologous Stem Cell Transplant (ASCT), work together? Not all at the same time, no. Induction therapy and an ASCT will probably sidetrack your sex life- for a while. But I will say that there can be a sex life for the multiple myeloma survivor after his/her autologous stem cell transplant.

The real question to consider is why would a person diagnosed with MM undergo an ASCT if he/she didn’t have to? The short answer is that an MMer might have to someday. But studies show that overall survival (OS) is not affected one way or another based on if an MMer has an ASCT now or later. Studies confirm a longer “progression-free survival” not “overall survival” with an ASCT.

I was diagnosed with MM in 2/94 at the age of 34. My account, therefore, is from the male viewpoint. One the one hand, my induction therapy, and ASCT crushed my sex life. On the other hand, I was young enough to come back from aggressive, high dose chemotherapy. Let me explain.

As you can read from the second article linked below, an autologous stem cell transplant turns your endocrine system upside down- low testosterone, adrenal insufficiency, and azoospermia to name just the side-effects that I’m pretty sure my sex life required.

And those are just the biological challenges. There is a mind-body side to sexual intimacy that the numbers don’t address. I gained 50 pounds leading up to my ASCT and I lost 70 pounds over the five years following my ASCT. I lost every single hair on my body during my induction therapy. Most of it grew back after the ASCT. Needless to say, my diagnosis, induction therapy and ASCT was difficult for my wife-caregiver.

If you read the “endocrine disorders” study carefully you will see that the study hints at life improving after about a year post ASCT. While I knew none of what the study talks about, I felt much of it. Meaning I felt that my testosterone was low. I knew that my energy was non-existent. Supplementing with DHEA helped. Testosterone cream helped (doctor prescribed by a compounding pharmacy). Exercise helped a lot.

In short, while my wife and I had a lot to deal with in my thirties, I was able to improve my situation dramatically in the years following my ASCT.

I am an MM survivor and MM cancer coach. What stage is your MM? Are you considering an ASCT? 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

Recommended Reading:

Sex After Cancer

“At diagnosis, quite a few cancer patients spy Eros rushing out the door. I know I did. For some, eroticism vanishes during or after treatment. Anhedonia, the inability to feel pleasure, can afflict both men and women with cancer. We often get more help from one another than from the medical specialists who are beginning to address this challenge.

It can be difficult to experience desire if you don’t love but fear your body or if you cannot recognize it as your own. Surgical scars, lost body parts and hair, chemically induced fatigue, radiological burns, nausea, hormone-blocking medications, numbness from neuropathies, weight gain or loss, and anxiety hardly function as aphrodisiacs…

“Sex and Cancer,” a new book by Dr. Saketh R. Guntupalli, a gynecologic cancer specialist, and Maryann Karinch sets out to help women with gynecologic or breast cancer. Dr. Guntupalli and Ms. Karinch labor mightily to provide scientific evidence for an insight some might consider predictable: “We found that sex was less pleasurable for women after cancer and that all types of sexual activity — oral, vaginal and anal — decreased after cancer.” In patches of ponderous prose, their book describes the ways in which treatment inhibits romance.

More informative are the sections of “Sex and Cancer” in which the authors explain what people can do to ensure that “the emperor of all maladies” will not rule and wreck their relationships. First and foremost, Dr. Guntupalli and Ms. Karinch urge readers not to “slap a ‘dysfunction’ label on your love life just because you read something about what is ‘normal’ or ‘average.’” This is precisely the advice that prostate cancer patients also receive in self-help manuals.

The capacious term “sex” should not be conflated with penetration or intercourse, according to Dr. Guntupalli and Ms. Karinch. “There is no dysfunction if both members of the couple are happy with the level and style of intimacy they enjoy.” Kissing, hand-holding, cuddling, caressing and massaging bond couples by kindling arousal and ardor. The authors do not mention the useful word “frottage” which comes from the French for rubbing or friction; it neatly bundles together many forms of stimulation that prompt tenderness and excitement…

With a therapist or on their own, partners can try “sensate focus exercises” that involve them in exploratory touching without the pressure to achieve a goal like an orgasm. Pelvic floor exercises, vibrators, techniques for dealing with scar tissue and restricted range of motion, dilators as well as lubricants: Dr. Guntupalli and Ms. Karinch tackle these specifics to encourage survivors to redefine sex after cancer as a sensual source of delight in a range of activities…

When Eros disappears, books and conversations can help couples prepare to welcome the god’s return. As the poet Marianne Moore once put it, in an entirely different context, “Whatever the problem, we must elude the sense of being trapped — even if all one can say to one’s self is, ‘if not now, later.’” For many people, better later than never…”

Endocrine disorders during the first year after auto sct.

 “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...

Three months after the transplant:

Twelve months after the transplant:

  • insulin-like growth factor-1 values were still low in 36 patients (38%).
  • Menstrual cycles resumed in four women;
  • the follicular stimulating hormone, luteinizing hormone, and estradiol levels improved in 10 patients.
  • Testosterone was low in only two men (4%).
  • Seminal analysis revealed azoospermia in 32 (91%) of 35 men examined.
  • Subclinical hypothyroidism was found in 11 patients (12%); eight of them had previously received radiotherapy for the upper half of the body.

Leave a Comment:

Myeloma Chemotherapy-Velcade, Revlimid, Dex- MRD-, STOP! - PeopleBeatingCancer says 4 years ago

[…] Multiple Myeloma, Sex and an ASCT […]

Multiple Myeloma Therapy = Accelerated Aging - PeopleBeatingCancer says 5 years ago

[…] myself short, long-term and late-stage side effects including accelerated aging. Further, while “endocrine disorders” are not the same as “accellerated aging”, the point of the article linked below […]

Autologous Stem Cell Transplant Ages Multiple Myeloma - PeopleBeatingCancer says 5 years ago

[…] Multiple Myeloma, Sex and an Auto SCT- […]

Cancer Therapy = Accelerated Aging - PeopleBeatingCancer says 6 years ago

[…] myself short, long-term and late-stage side effects including accelerated aging. Further, while “endocrine disorders” are not the same as “accellerated aging”, the point of this linked post is that […]

Renee Hague says 6 years ago

I’d be interested in having David as a coach!

    David Emerson says 6 years ago

    Hi Renee-

    I see that you have registered to watch the MM CC webinar. If you watch the webinar and decide that you would like to order the MM CC program you can use the coupon code “webinar” to buy either the basic or premium program for $100 off. If you sign up for the premium package I include a consultation to discuss your situation. Thanks, David

Julio says 6 years ago

Hi David, it is amazing and inspiring to read your lines, full of hope and greatness. I really like to hear people fighting and winning this monster called MM.

Im 33, and my mom was diagnosed last july at 65. It was a horrifying experience the “before-diagnosis” weeks. She has been always active, even more than me. Always had good health. From one day to another, eveyrthing changed. Suddenly she had trobule walking. The next day she couldnt walk. The next day she was on a wheelchair. And so on… A few days later, many thousands spent, and after every single imaging and blood test on the hospital arsenary, she was diagnosed with Free Light Chain MM on july 24th, and also with 30% of plasmatic cells according to a bone marrow biopsy. Every other test was normal.

Treatment started on august 1st, with 16 weeks of Bortezomib-Talidomide-Dexamethasone. Eight days later, she had a deep vein thrombosis due to a blood clot caused by the thalidomide. We rushed to E.R. where they gave anticoagulants for 4 days. They changed the aspirin she was taking to something stronger, a.k.a. Clexane. At the end of week #15, lab tests were repeated, same as bone marrow. Free light chains were back to normal, and the new bone marrow biopsy showed ZERO cells.. yey!! that was on november 1st.

By that moment she was offered the option of the SCT. After some research of its side effects and damage it causes to the body, she refused to do it. So her doctor gave her another 8 weeks of the same drugs, as consolidation therapy. The last one is tomorrow.

After that, my mom will be under bortezomib every 2 weeks, as maintenance. She is also taking vitamins and many supplements that fight cancer.

What do you think? I need her to live many more years. Prayers and hope are already with her. She is everything to me. Please let me know your advies and recommendations.

Looking forward to hear from you

    David Emerson says 6 years ago

    Hi Julio,

    I am sorry to read of your mom’s MM diagnosis though it is great to learn that she is in complete remission. Low-dose maintenance therapy such as bortezomib/Velcade, has been shown to increase overall survival in MMers. I agree with your mom living an evidence-based anti-MM life through supplementation. There are a number of supplements shown to enhance the efficacy of bortezomib. These are called “integrative” therapies and can lengthen overall survival.

    I would encourage your mom to also eat an anti-MM diet, and pursue evidence-based anti-MM lifestyle therapies such as WBH, detox, etc.

    Good luck to you and your mom,

    David Emerson

Tim says 6 years ago

Hi David – I was diagnosed at the age 43 in 2011. I had and ASCT in July of 2011 and was on Revlimid maint until September 2016, then Ninlaro was added in 2016, switched to POM in Dec 2017 and now I am on Valcade subq injections.

Your story on Sex and ASCT caught my eye, I saw it on Facebook and first time visitor to the website.

Being post ASCT for 6 1/2 years my sex drive has never came back. Did yours come back and did you take a supplement or prescription or did it just naturally come back?


    David Emerson says 6 years ago

    Hi Tim,

    Keep in mind that you and I are “off the ranch” in thinking about our biological functions years after high-dose chemotherapy. Studies usually don’t apply to us.

    Having said the above, yes, my sex drive, function, etc. returned post ASCT but nothing has ever been the same. Keep in mind that I was in my early 30ies before my ASCT and in my early 40ies once I had healed and my body was normalizing post ASCT.

    Yes, I took both over the counter supplements as well as doctor prescribed drugs. To identify my deficiencies I underwent a number of blood tests taken by a company called LabCorp- serum and free testosterone, DHEA, etc. You can undergo similar blood testing at your doctor’s office but the testing will be a lot more expensive.

    Once I identified my issues (keep in mind I was testing for me MM to through SPEP testing), I then set about fixing them. Testosterone cream from a compounding pharmacy and low-dose DHEA supplements to name two.

    The above process took several years from start to finish. I didn’t wake up one morning and simply decide that my testosterone was low and I needed to fix it.

    Also keep in mind that I was researching and developing an evidence-based, non-toxic, anti-MM lifestyle through nutrition, supplementation, etc. While it is clear that your conventional MM therapies have been keeping your MM under control, you may run out of convention options some day.

    I hope this helps.

    Good luck,

    David Emerson

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