been on hormone replacement treatment for andropause for years. Now considering stopping.

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Diagnosed with Non-Hodgkins Lymphoma in 1994 & had chemo (CHOP) for 6 months.

Recurrences every year until 2000 when I had an autologous bone marrow transplant. In the first few days of high dose chemo I suffered a heart attack resulting in 5 x Coronary artery by passes. ( after my blood recovered from the chemo)

6 months later I continued with the transplant expecting to get 10-15 years cancer free.. l achieved 13 months before my first recurrence of a 9.5 cm mass behind my liver.

Radiotherapy, 30 cycles of 4 field resulted in the neuking of my gall bladder and subsequent removal..

Another 11 months ans a golf ball sized mass in the lower lobe of my right lung....more Radio..

since all of this I have developed andropause and commenced TRT in the form of Reandron 1000 injections every 90 days..

Initially I was able to notice some benefit but now many years on there is no real benefit.

My testes have all but disappeared along with erections.. My mind is willing but my body unable to respond. I am considering ceasing treatment but I am wondering about the possibility of side effects..

Am I to become a candidate for prostate problems as I have BPH . What about further heart problems, osteoporosis, or any other nasties? I'm too old at 69 to be worried about gynecomastia but I guess it could enter the equation.

Has anyone else experienced similar?

I would greatly appreciate any input on this matter..

Sincer

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  • Posted

    My goodness JohnEdna.., You have been through it all..

    I admire you. I was diagnosed with DLBCL, grade IV,  last summer 2015 and had 6 rounds of chemo. No radio therapy. The lymphoma had migrated to my left hip joint, right hip bone and a little on pubic bone.

    Clinical remission now since Nov 2015, but so so scared I will relapse..They say that everybody do relapse..Every little pain I get, I get worried.. Oh well, I just have to live with the uncertainty...Nice to hear from you...I know this is not an answer to your question, but I though I write anyway..

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    • Posted

      Thanks for your time to comment on my problems and for letting me know of your own situation..

      Clinical remission is a funny thing and I tended to ignore it. All of my recurrences were within 11-15 months and it is only in the last few years that I have been able to get a REMISSION of 5 full years without recurrence at all. I believe now that I am truly in remission.

      As I like to say preserved by medication but suffering the consequences of 22 years of heavy stuff..

      I was 47 at diagnosis and smart enough to stay positive and work with the medicos. So I would recommend that you adopt a similar pattern.

      Good luck t you and if you would like to stay in touch please do via this link. Fill me in on more of your data.

      I am in Australia.

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    • Posted

      Hi again, I'm not sure what information you have or have available to you. I did a bit of research for myself and some of my friends through a site called Medline Plus just Google it if you want to see what is happening in relation to your lymphoma around the States.

      Has your oncology team mentioned Bone Marrow Transplantation? What about clinical trials?

      Ask heaps of questions abd research all avenues. Seek out side effects not to be a worrier but to understand what may or may not happen. And if it does occur you will be ready and understand how to deal with it instead of being traumatized by an experience that you weren't ready for..

      Hope some of these things are helpful to you.

      Cheers....... JohnE.

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    • Posted

      Hi mitouback, it's been a couple of weeks since your communication and I was wondering how you are going and if there have been any changes in your situation.

      I know using this chat forum isn't supposed to be a medical point of reference but it sure is nice to communicate with people who are in similar situations to ones self.

      A little bit of caring and sharing goes a long way.

      Best wishes to you and those near and dear to you.

      Regards, JohnEdna

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    • Posted

      Hello again Mitoubak,

      ?Its been a little while since hearing from you and about your situation, I was wondering how things are going for you at the moment.

      Hopefully you have dismissed your fears of recurrences and that you are still in clinical remission.   Negative thoughts are not good for you although they are difficult to put aside when you are threatened by the unknown.

      Full remission isn't truly achieved until 5 years without a recurrence, I'm lucky to have achieved that, although like you the thought is always there deep in my sub-conscious.

      ?I suppose the best support I can offer to you is to remain positive, and to get on with your life the best way you can.  

      ?Is the involvement of lymphoma in your bone under control or is it still causing you pain?

      ?I am not sure where you are in the world, but I am in Australia, where there has been a lot of discussion about Immunotherapy lately and the positive reports from clinical trials.  About 20 different kinds of Cancers have been targeted and most have responded favourably to the treatment. 

      Perhaps if you were to mention this to your medical professionals you may qualify if the need still remains.

      ?I wish you luck, my support is here for you if you feel the need for a chat. 

      Best wishes and keep smiling.  

      JohnEdna. ;-) 

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