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embarrassing q for the lads

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Hi folks. 37 year old male here, dx'd November of 2018. PCR levels good, CBC is pretty solid (platelets fluctuate but were under control last go round). I'm on Dasatinib and have lately been experiencing some embarrassing sexual side effects (low libido, can't achieve/maintain an erection). Has this been anyone else's experience? When I first began treatment, I almost had the opposite issue (really raring to go all the time). Now, nothing is "working". Any advice?

Hi,

This is an important health issue and certainly would not be embarrassing if you were to discuss it with a medical professional.Given your age it would be unlikely that your condition is related to the early onset of prostate cancer but it might be wise to think about asking for the PSA test;it is not a perfect measure but it is a good starting point.If the PSA is over 4.0 then it might be the basis for further investigations /tests.Prostate cancer if caught in the early stage is curable-left to develop it is a killer disease.My experience is of a routine PSA being a little too high so we monitored it and used specialist MRIs for a few years then a biopsy and decided to treat it in the very early stages-it is zapped we think but the next year will tell.There have been some side effects but I was warned before the treatment was given.

There have been some studies undertaken regarding the liklihood of those with CML being more prone to develop other cancers;apparently there is not as yet any strong link but I believe that it pays to be a bit more suspicious.

Your situation might not be prostate related, might/might not be related to your medication but there is a simple remedy for your situation and that is to consider requesting Sildenafil (generic Viagra) from your doctor (mention your mental well being/distress and it will help).The side effects might be a slight headache and flushing and if you have a cardio- issue an alternative would be needed.It does not interact to any extent with Imatinib or Dasatinib.It is available in 25,50 and 100mg tablets.

If you are in the UK the NHS is a bit stingy with the prescription but that goes back to the time before the drug was off patent and branded Viagra was quite expensive.My urologist issues me with a private prescription as the generic drug is not expensive and for me it contributes to a happy family life.

Erectile dysfunction(ED) is an issue for men of a range of ages and because of its sensitivity  and that of other urinary issues  it has  been seen as embarrassing but that has led to incurable prostate cancers and for many a poor quality of life.In a similar vein for female health neglect of early markers for cervical and ovarian diseases/cancers has led to untreatable conditions.

I wish you well,

John

Thank you very much for your frank reply. I'll talk to the doc.

Hi!Maybe your issue is mental... I mean how is your psycology this period?

I thought I had an issue for the 1st couple of years since diagnosis but for about a year my "little" man is well back in action. I believe psychological impact plays a huge part in getting and keeping him in action. Onwards and upwards for you! No pun intended :-)

Al

Haha, thanks for a different perspective, folks! Psychology might well play a part. I have a partner who has been quite understanding, but I think we've both spent the past year being so careful to isolate, and made even the most inconsequential interaction so fraught, that it's hard to just relax and be together. I'm sure many other CMLers have felt the need to be even more careful, and that weighs heavily on everything else. I will get a physical check up, and then try to find some psychological resources as well.

You're not alone in your suspicions.

I had exactly the same experience: the opposite issue at diagnosis (maybe all those extra white cells did have a positive impact somewhere!), but issues after a two or three years. I had examinations from a specialist and the only conclusion was Dasatinib 'could' be the cause but no specific answer.

5Mg of Cialis/Tadalafil daily was prescribed and, like magic, everything was fine. 5mg (branded or generic, it didn't make any difference) provided a background level of medication which meant life could go on as normal without having to 'prepare' 45 minutes before a performance. The consultant had suggested starting with 5mg/day and possibly upping it if it wasn't fully successful, but I never needed more. I had no side-effects from it at that level, whereas taking larger amounts on a one-off, per performance basis did have side effects - blocked nose, slight headache etc.

I've now been in treatment-free remission for about 18 months, and have found that I'm back to how I was before I was diagnosed, late 50s, no issues. I stopped taking the Cialis at the same time as I stopped Dasatinib.

My non-medical-qualified deduction is that for me the drug did have an effect and that was probably amplified by subsequent anxiety which makes it worse. The low libido I ascribe to the nervousness about the issue.

Your consultant or GP may prescribe Tadalafil if you ask, but Generic Cialis/Tadalafil is now available online from a number of online NHS pharmacists who will do a private prescription after an online consultation, I'd suggest you give that a go if they will prescribe it to you and you have no contra-indications. It's not very expensive.

Interestingly, Cialis is also the prescribed medication for one of the rare side-effects of Dasatinib (TKIs?) which is the difficult-to-diagnose pulmonary hypertension, so you get a two-for-one benefit in the unlikely case where it's affecting you :)

Hi.  Glad you posted this.  Like you I had no problems with my sex life until I was diagnosed with CML.  So two years ago it was discovered that my Testosterone level was very low.  I am now on TRT therapy which as really helped in so many ways , libido psychologically, higher energy levels and mood.  

I have had it all checked with my consultant at Hammersmith hospital and interrelations with the TKI and the T therapy.

Get your DR to test the levels of your Testosterone also - a PSa test  

Diagnosed 2/15 - on 400 mg a day imatinib - PCR 0.06

Philip collins

 

Given you are relatively young, the usual explaination (without CML as a contributory factor) for ED is related to porn consumption. There's plenty of studies and talks about this on wider internet.

Yes I definitely read those same things and cut porn out completely a few months ago. I don't think I turned to it too often but maybe I did. So far it hasn't changed things but it's only been a few months with none of it. If it's a brain rewire, I'm sure it takes time, but it will be worth it. Meantime I got a requisition to test testosterone and stuff. Really appreciate the replies, everyone. I don't feel as embarrassed now.

I will tell you my libido crashed big time as soon as i started on 100 mg of sprycel. Was on 400 mg of gleevec for years and never had a problem. It is definitely the sprycel. It is better now that i reduced to 50mg but not great. I am go to call my doctor and try Cialis. No doubt about it though, it's the sprycel! I wish i would have know sooner about daily use of Cialis. My Dr never suggested trying Cialis when I mentioned it to him with my last physical.

Hi, I have the same issue. Male, just turned 30, started TKI treatment 1st,Jan,2020. Has been always very sportive and never experienced issues with low libido and ED(almost the opposite). I kind of noticed during last Summer that my libido dropped and thought it was a good thing at beginning as I could spend less time thinking about this matter. But during last winter I started to realize it has gradually turned into a problem. No sex drive, no interests in girls and start to experience ED. I went to hospital for a check on testosterone level recently and the result shown that it is within normal range but at the bottom. What I also noticed was that my body fat went up, it is again never happened to me as my body used to have a very high burning rate and hard to gain fat even when taking lot of high calorie food.

I did some research afterward and bought Vitamins D, Magnesium& Zink, which I learnt that low level of these elements may cause low T. Besides also bought Ashwagandha which is believed good for testosterone and Tribulus which is believed can increase libido. I have found researches showing TKI can cause low T but not much info on the mechanism how it affect the process of testosterone production. I hope it is due to TKI cause low level of above elements and further affects T level. And alternatively, if the T level cannot be increased naturally hope the Tribulus can at least solve the ED issue.

I hope more people in this forum with similar problem can share their experience and have their testosterone checked if possible. Together we might find some better solutions to increase our life quality with CML. I'll monitor myself for a while and share the result.

Meanwhile, anybody would like to share their experience with TRT or oral testosterone supplement? I heard that long term usage of exogenous testosterone may have negative impacts but not sure if it's true or to what extent is the impact. Would be appreciated if someone with this knowledge or experience could share.

Thanks!

Hi, I have the same issue. Male, just turned 30, started TKI treatment 1st,Jan,2020. Has been always very sportive and never experienced issues with low libido and ED(almost the opposite). I kind of noticed during last Summer that my libido dropped and thought it was a good thing at beginning as I could spend less time thinking about this matter. But during last winter I started to realize it has gradually turned into a problem. No sex drive, no interests in girls and start to experience ED. I went to hospital for a check on testosterone level recently and the result shown that it is within normal range but at the bottom. What I also noticed was that my body fat went up, it is again never happened to me as my body used to have a very high burning rate and hard to gain fat even when taking lot of high calorie food.

I did some research afterward and bought Vitamins D, Magnesium& Zink, which I learnt that low level of these elements may cause low T. Besides also bought Ashwagandha which is believed good for testosterone and Tribulus which is believed can increase libido. I have found researches showing TKI can cause low T but not much info on the mechanism how it affect the process of testosterone production. I hope it is due to TKI cause low level of above elements and further affects T level. And alternatively, if the T level cannot be increased naturally hope the Tribulus can at least solve the ED issue.

I hope more people in this forum with similar problem can share their experience and have their testosterone checked if possible. Together we might find some better solutions to increase our life quality with CML. I'll monitor myself for a while and share the result.

Meanwhile, anybody would like to share their experience with TRT or oral testosterone supplement? I heard that long term usage of exogenous testosterone may have negative impacts but not sure if it's true or to what extent is the impact. Would be appreciated if someone with this knowledge or experience could share.

Thanks!