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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.

An important aspect in diagnosing this problem is an open dialogue between the patient and the doctor to establish the true cause of the pathology, whether it is a psychogenic factor or a serious illness such as diabetes or malignancy.

I’ve been on TKIs, imatinib to be exact, for over 11 years. No experience with dasatinib. But in general my sexual libido has not been exactly raging but I am 60 so maybe that has something to do with it. My advice for taking other drugs like viagra would be to hold off until you get a handle on any possible side effects that may pop up for you in the future. It’s tough enough for the body to acclimate to the TKI, adding another substance will not make it easier and could be adverse. I for example have a problem with subconjunctival eye hemorrhages related to TKI and my fear of taking viagra would be for my eye to literally explode. Of course that’s being a little dramatic but in general dealing with side effects is unfortunately a reality for a lot of CML patients. If you do try viagra go slow and cut the pill in two and take it slow. 

Hi, I was diagnosed earlier this year. Within my first month of taking Dasatinib 100 mg, I noticed some serious changes in my "region". Its like everything went pale and numb. I stopped having sexual thoughts anymore (almost like a personality change). Its been like that since then and is not improving. I discussed trying cialis with the pharmacists in the oncology department. They did not object to me using it or its interaction with dasatinib. I have tried using it but I dont think it really works that well for me. I think the nerves are completely demyelinated down there. I also have jittery nerves and partial numbness in my feet and hands. Even my muscles are losing mass. My left pectorial is showing mild signs of gynecomastia. The hematologist is not budging on switching meds or reducing the dose. Any other symptoms you are dealing with ?

If your doctor won't consider changing your prescription, maybe you should consider changing your doctor.  Or at least getting a second opinion.

Maybe a pill splitter would solve your problem?

 

Yes, I did think about it. I’m just slightly worried since I am slightly falling behind on the bcr abl log reduction at the 6 month mark already.

by pill splitter, did you mean literally mean breaking the pills in half or am I completely mistaken? 

thanks for replying. I am so worried with all this. 

Some doctors believe 50mg/day of dasatinib is a better starting dose than 100mg/day because most patients still have a good reduction of Bcr/Abl1 /the lower dose with fewer or less severe side effects.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7842568/

 

Yes, a pill splitter is a useful tool if it's decided to halve your dose.  It's important to be careful with any dust created when cutting the tablets.

How has your response to treatment been so far?

Thanks so much for that info … good thing I found this forum … 

As for my response (Dasatinib 100mg)…

After the first 3 months … I was told my target log reduction was supposed to be atleast 1.0 .. and I achieved it with a 1.7 ..

at the 6 months mark … the target being 2.0 … I only reached a 1.9 … 

I will let you know about my 9 month mark by Christmas..