Libido in both men and women with multiple myeloma. Is the intimacy part of our relationships gone now that we’ve been diagnosed with multiple myeloma? Does anyone use or suggest using products like Viagra and Cialis?
Is the intimate part of our life with our partner now gone? I seem to have no interest any longer and I feel terrible about it. Will the desire to be intimate with my wife be gone forever ? Is there anything that can be done to improve that part of our lives while having multiple myeloma.
Anyone have information, suggestions, or news about their libido of people with multiple myeloma? Is our sex life over too? Is this another side effect we must deal with for more survival time?
I think it’s a subject worth writing about and discussing. I don’t recall any articles about intimacy. My doctor seems to change the subject as fast as I bring it up.
I would like to hear from the multiple myeloma patients that are having experiences or problems with their intimacy since being diagnosed with multiple myeloma. Do any of you use Viagra or Cialis ? Does it help, is it recommended ? Are there other things we can do to get our libidos back to close to normal. Or is that part of our lives over? Appreciate comments.
Any serious feedback or ideas on this subject are welcomed.
Forums
Re: Multiple myeloma and libido
I have read or heard from several men who have multiple myeloma who have found that their testosterone levels are very low or nil. Have you had that checked? Could be part of the problem. Also, remember that depression can have a significant impact on libido.
Nancy
Nancy
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Multiple myeloma and libido
Hi John,
I don't have much to offer, but I do have multiple myeloma as of last August. I have found over time that my libido has diminished as yours has to almost nil. I attest it to the various drugs I am taking to combat the disease as the reason for this.
I feel real bad – more so for my partner – and frustrated. I have taken ED drugs to help, which may to a degree, but still cannot complete the love making with my girl friend.
She is very understanding, and puts no pressure on me whatsoever, which helps my state of mind.
I am scheduled soon for a stem cell transplant (SCT) and am thinking positive thoughts – that when it is over and down the road my immune system is better, that I will not have to be on all the drugs I am currently on. So, at that point, I am thinking my libido will return to a somewhat normal state.
You bring up a good point here John, and I will keep looking around for further information / tips on this topic.
I don't have much to offer, but I do have multiple myeloma as of last August. I have found over time that my libido has diminished as yours has to almost nil. I attest it to the various drugs I am taking to combat the disease as the reason for this.
I feel real bad – more so for my partner – and frustrated. I have taken ED drugs to help, which may to a degree, but still cannot complete the love making with my girl friend.
She is very understanding, and puts no pressure on me whatsoever, which helps my state of mind.
I am scheduled soon for a stem cell transplant (SCT) and am thinking positive thoughts – that when it is over and down the road my immune system is better, that I will not have to be on all the drugs I am currently on. So, at that point, I am thinking my libido will return to a somewhat normal state.
You bring up a good point here John, and I will keep looking around for further information / tips on this topic.
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Guest
Re: Multiple myeloma and libido
Hi John and others,
I recognize this in my relationship. It seems my husband's libido (he has had myeloma for 5 years now) has gone completely after an autologous stem cell transplant. He was being treated with melphalan among other medication.
I am glad you bring the subject up since I could not find any information about this subject.
I recognize this in my relationship. It seems my husband's libido (he has had myeloma for 5 years now) has gone completely after an autologous stem cell transplant. He was being treated with melphalan among other medication.
I am glad you bring the subject up since I could not find any information about this subject.
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Monkey
Re: Multiple myeloma and libido
I'm glad to see this revived topic. My husband, six years into aggressive and refractory multiple myeloma, always managed to keep his sex drive until several months ago. Viagra and Levitra did not work for him, so he had his testosterone checked. Sure enough, it was low. He recently discussed the risk of using a testosterone topical gel with his hem/onc, who told him the risk to him was mainly blood clotting, but if my husband wanted to improve the quality of his life, his doctor said to go ahead with the gel. He just started using it, so hasn't had results yet.
My problem as the wife / caregiver is that my libido is gone. I would be contented with just some affection, but husband is not the affectionate type. He is not unkind, it has just never come naturally to him to display any affection short of actually having sex.
I am stressed out enough trying to keep some income coming in, spending two days a week driving four hours to get his treatments, cooking healthy meals and keeping house, not to mention tending to him when he gets his fairly frequent infections. I do all this gladly and lovingly, not complaining, but I do not want the added pressure to have sex.
I wonder if there are any other loving wives / girlfriends who could weigh in on this.
My problem as the wife / caregiver is that my libido is gone. I would be contented with just some affection, but husband is not the affectionate type. He is not unkind, it has just never come naturally to him to display any affection short of actually having sex.
I am stressed out enough trying to keep some income coming in, spending two days a week driving four hours to get his treatments, cooking healthy meals and keeping house, not to mention tending to him when he gets his fairly frequent infections. I do all this gladly and lovingly, not complaining, but I do not want the added pressure to have sex.
I wonder if there are any other loving wives / girlfriends who could weigh in on this.
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Denise H
Re: Multiple myeloma and libido
Denise H,
Although your post regarding multiple myeloma and libido is from 2013, I resonate with your concerns and your response.
My husband has only had myeloma for 5 months (he was on dialysis for 3 months). His slightly reduced sex drive is a relief to me as I scramble to work full time, teach part-time, and keep all the pieces of our life together. We are both 59, he cannot work right now and not sure about if ever.
It feels as if everything is focused on his care, well being, and future, and I feel pressured in every direction. He deserves good medical care and the love and support from me which I provide, but I struggle with juggling and balancing it all.
Although your post regarding multiple myeloma and libido is from 2013, I resonate with your concerns and your response.
My husband has only had myeloma for 5 months (he was on dialysis for 3 months). His slightly reduced sex drive is a relief to me as I scramble to work full time, teach part-time, and keep all the pieces of our life together. We are both 59, he cannot work right now and not sure about if ever.
It feels as if everything is focused on his care, well being, and future, and I feel pressured in every direction. He deserves good medical care and the love and support from me which I provide, but I struggle with juggling and balancing it all.
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COV
Re: Multiple myeloma and libido
Took my Survey yesterday....You know, the one from Celgene. ( every month) Just to get my $$$ chemo. (Poison)
" Have you had sex with.... " Press 2 " Did you wear triple condom..." " Are you still alive, you filthy....."
After taking the survey, being bombarded with negative information about sharing bodily fluids, then being further reminded every month by a live CVS Pharmacist, about how "Toxic" you are while taking this drug (Revlimid), have to have extremely protected sex, no blood donations, using needles, etc, etc ......Who the hell gets happy for sex ?
It ( sex) suddenly has all the allure of an unwanted medical procedure.
I'm 57, don't need viagra, have been "snipped" ( vasectomy), happily Divorced, monogamous, clean, a parent of college age kids, ---so I should be right in line for lots of blissful sex...right ?
Nope--Every month I get reminded that I'm mostly a toxic bag of "fluid"--that mostly needs to keep to myself. Don't start any relationships, either--you will just get sick and die on them.
Sheesh !
Whether male or female, the Revlimid precaution protocols and the reality of multiple myeloma, are really a downer, as far as libido is concerned.
Just my 2 cents.
To the rest of you that can still "do it"--be very happy. It's not just Physical Issues.
" Have you had sex with.... " Press 2 " Did you wear triple condom..." " Are you still alive, you filthy....."
After taking the survey, being bombarded with negative information about sharing bodily fluids, then being further reminded every month by a live CVS Pharmacist, about how "Toxic" you are while taking this drug (Revlimid), have to have extremely protected sex, no blood donations, using needles, etc, etc ......Who the hell gets happy for sex ?
It ( sex) suddenly has all the allure of an unwanted medical procedure.
I'm 57, don't need viagra, have been "snipped" ( vasectomy), happily Divorced, monogamous, clean, a parent of college age kids, ---so I should be right in line for lots of blissful sex...right ?
Nope--Every month I get reminded that I'm mostly a toxic bag of "fluid"--that mostly needs to keep to myself. Don't start any relationships, either--you will just get sick and die on them.
Sheesh !
Whether male or female, the Revlimid precaution protocols and the reality of multiple myeloma, are really a downer, as far as libido is concerned.
Just my 2 cents.
To the rest of you that can still "do it"--be very happy. It's not just Physical Issues.
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Rneb
Re: Multiple myeloma and libido
A drug called alprostadil (Caverject, Muse, Edex) is very effective. It won't raise your libido, but it will give men a very healthy erection, like a teenager again.
The down side is that it requires either depositing a pill-like object into your urethra or an ejection in the penis. I know an ejection there sounds terrible, but it really isn't once you do it the first time. The needle is very thin and the injection is quick and goes into the side / spongy part of the penis.
You must consult your doctor to get this prescription and he / she will more than likely do some testing on you to see what the proper dosage should be. This is important, as too much could cause the erection to last too long, which can be harmful if over 4 hours.
Last year I asked the question on this forum about using this drug while having multiple myeloma ("Can alprostadil injections be used by myeloma patients?"). One physician responded that, as far as he knew, there have been no studies to show that it would be harmful. I asked the question because I heard somewhere that it could reduce the effectiveness of the chemo if you are taking it at that time. So ask your hematologist. All I can say is that it renewed our sex life, and for that I am grateful.
Hope this is helpful.
The down side is that it requires either depositing a pill-like object into your urethra or an ejection in the penis. I know an ejection there sounds terrible, but it really isn't once you do it the first time. The needle is very thin and the injection is quick and goes into the side / spongy part of the penis.
You must consult your doctor to get this prescription and he / she will more than likely do some testing on you to see what the proper dosage should be. This is important, as too much could cause the erection to last too long, which can be harmful if over 4 hours.
Last year I asked the question on this forum about using this drug while having multiple myeloma ("Can alprostadil injections be used by myeloma patients?"). One physician responded that, as far as he knew, there have been no studies to show that it would be harmful. I asked the question because I heard somewhere that it could reduce the effectiveness of the chemo if you are taking it at that time. So ask your hematologist. All I can say is that it renewed our sex life, and for that I am grateful.
Hope this is helpful.
Re: Multiple myeloma and libido
I have had multiple myeloma for 3 years and Viagra worked good until I changed chemo and now it quit working. I am 76, so that may have something to do with it.
My advice is to buy a good vibrator and keep your wife happy. It does work, and enjoy life as much as possible.
I also went thru a stem cell transplant and was free for a year. 1 and 1/2 years ago, it came back. Viagra worked after all of that until recently.
My advice is to buy a good vibrator and keep your wife happy. It does work, and enjoy life as much as possible.
I also went thru a stem cell transplant and was free for a year. 1 and 1/2 years ago, it came back. Viagra worked after all of that until recently.
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Ddr100
Re: Multiple myeloma and libido
I, too, have problems with erectile dysfunction. I so much want things to be like they were before getting older and before multiple myeloma came along. I was diagnosed 3 years ago. I have regained some desire but still have erectile dysfunction pretty bad. I am like a previous poster and enjoy using the vibrator on my wife to help her to have some good orgasms, but I want more. I am 69 but still have desire left.
I read about Muse and the alprostadil drugs. That sounds great, but everything I came across said not to use it if you have multiple myeloma. That is a downer. I am wondering if other forum members here used it or gotten approval from their oncologist. I sure would like to hear of drugs or methods you have come across that work for you.
I read about Muse and the alprostadil drugs. That sounds great, but everything I came across said not to use it if you have multiple myeloma. That is a downer. I am wondering if other forum members here used it or gotten approval from their oncologist. I sure would like to hear of drugs or methods you have come across that work for you.
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JMan
16 posts
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