74 year old feller here, had right mastectomy and lymph node clearance Feb 2nd 2022. Started chemo 18th May but withdrew from programme after two cycles due to severe side effects which saw me in A&E both times and now on blood thinners. Just had my 3rd Herceptin injection and all seems ok at the moment. Will be on this for approx 12 months in total.
Following on from Herc will be 5 years of daily Tamoxifen !
Research indicates that Tamo may not be an easy ride. I have a few Q's :-
1/ Are there any men on here who have experience of using it, if so how did/do you find it?
2/ What is the purpose of it exactly?
3/ If I agree to using Tamo I will be 80 years old by the end of the course, is it worth it if it is going to be rough ride?
I am a big believer in quality of life rather than quantity.
Some facts about my particular circumstances to consider are :-
Longstanding lump in my right armpit saw me off to the G.P. which led to an Ultrasound appointment. Biopsy revealed secondary cancer cells 'most likely of breast origin'. Breast biopsy X2 revealed no sign of primary cells in the breast tissue. C T scan found nothing neither did follow-up PET C T scan. The Surgeon told me 'there is no sign of cancer elsewhere in the body'.
I was advised by the Surgeon to have surgery because cancer cells can be diffused throughout the tissue and only visible via a microscope. The post surgery laboratory report indicated no primaries visible, the sample was sent out of county for a second opinion but the result was the same.
Bearing in mind that when I was at home in agony 9 days after chemo and in need of of urgent medical attention, a 999 call revealed that it would be at least 2 hours before anyone could get to me. My wife had to drive me to hospital where eventually C T scan (3.30am) following day they found a Pulmonary Embolism hence the blood thinners.
Please feel free to comment or advise, I would appreciate any input.
Hello Turnup. I don't know the answer to your questions but there is a 'Blokes with breast cancer' thread that might help you. I think it should be a sticky on the forum so men can find it - I hope the link works
Best wishes
UPDATE:- Oncologist decided to start me on Tamo 1st Dec 2022 to run concurrent with the remaining Herceptin programme. BIG MISTAKE !!!
27 years ago I had a serious bout of Ulcerative Colitis, it was eventually cleared up with steroids and I have been free of it ever since until two weeks ago.
When I first researched potential side effects of Tamo it showed no links with U/C. Now, when I research Tamoxifen (citrate) and U/C together it shows a possible connection.
I am now back on steroids but I have withdrawn from the Herc programme (had 8 of 18 injections) and I shall take no more Tamo.
I have informed Oncologist via my GP that I will not have any more post surgery cancer medication. The meds have caused me more harm than disease ever did.
If anyone is reading this article whilst researching details in respect of their own personal circumstances please bear in mind that I am a victim of very rare circumstances regarding how this cancer has manifested itself upon my person.
I am not suggesting others should follow my lead. I am merely sharing information.
T.
Totally agree with -The meds have caused me more harm than disease ever did - it is really unfortunate that you are having problems and as i have said in the past ,doctors don't really know which drugs to give each person and are going off computer numbers. As the tamoxifen goes i have been on this 12 months with a few side effects and also different brands every month which i don't know helps me? It really is a minefield out there with all the meds and treatments flying around, it is not one size fits all ,and i would like doctors to follow up a 30 day call to see if there plan of drugs work rather than people ending back in hospital or suffering in silence kind regards
Had a Colonoscopy Sat 18th Feb and now waiting for appt with colo-rectal consultant. Course of steroids finished and no improvement, now on Mesalazine 1600mg (x3) daily plus suppository.
Apart from the discomfort of this condition I loathe being confined to barracks due to the need for urgent access to the 'throne' room up to ten times in any 24 hrs.
Oh deepjoy !!!
Another update :- No real improvement and still on meds, 8 x 5mg Prednisalone per day for one week then 7 per day for one week and so on tapering down to zero in single unit increments. Plus rectal foam at bedtime.
Spent 6 days before Easter in Lincoln General Gastro ward for assessment where an x-ray revealed stool blockage in the transverse colon. Surprised or what! Prescribed laxatives with no improvement until I got home. Under guidance from IBD nurse I went for the max, 8 sachets of laxative in 6 hours. What fun we pensioners do have. It seems to have got things moving but still a way to go.
I am looking to invest in toilet paper manufacturers.
Sorry to hear your 6 day all inclusive break in 5 star b&b didnt go to plan .but this may be a long shot but have they ruled out trying a fibre diet ie> IBS,our disabled daughter spent 10 days in hospital and she is now on crazy foods you wouldnt think work,ie no veg except carrots ,potatoes,white bread everything they tell you not to have.kind regards
I have had no dietary advice at all, just medication. In retrospect I find that surprising! I am pretty much back to my normal diet which is quite healthy but could be better. I tend to eat what SWMBO puts in front of me ( I'm not stupid ) after all why keep a dog and bark yourself?
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