Hormone Therapy (TAB) for another cancer

User

Posted 15 Jun 2019 at 16:43

I feel a bit of an imposter. I don’t have prostate cancer and don’t take PSA tests. I have a different (metastatic) cancer for which my hormone treatment of Total Androgen Blockade (TAB= zoladex+bicalutamide) is rare (I don’t know of any fellow patients with it), but I gather it’s widely used for advanced prostate cancer so am interested in this community's experience. I was diagnosed in Oct 2017 and put on chemotherapy but had a very bad experience with it and switched to TAB in Feb 2018. It has proved far better in terms of side effects and controlling my cancer. It’s great to have been able to live close to a normal life for the last 16 months but I am, of course, concerned about what will happen when the cancer gets resistant and TAB stops working (I have CT scans every 12 weeks) and about the return then to chemotherapy which seems the default option. My question is whether there are other treatment options which anyone (with metastatic cancer) has moved on to successfully after a long spell of TAB? I’d like to know what alternatives I could raise with my oncologist. Of course, if there’s anyone else out there like me with a different cancer (especially of head or neck) who has had a long spell on TAB, I’d also be interested to hear about your experience.

User

Posted 17 Jun 2019 at 20:27

While your hormone treatment is similar to one we have for prostate cancer, the chemotherapy / radiotherapy options will likely be very different for a different cancer - they really are different diseases, though certain treatments may be the same as for other cancers (though dosages and timings may be different).
The cancer 'process' is the same whatever the disease, but the details, speed, pattern of metastases, response to treatment etc., vary considerably.

You'd do much better to find a forum for people living with your cancer, and see how their experiences might help you. Many of us find sharing prostate cancer experiences to be very helpful, and educational too. But the things that 'work' for us may not be the least bit useful to you.

Also worth looking at the research into your disease; PubMed is a good place to start, with many abstracts and some full text articles available.

User

Posted 17 Jun 2019 at 20:39

Chris,

There is a thread on hormone treatment side effects here and how to avoid some of them which might be useful for you, although you have been on it long enough to know much of what's been mentioned. (Just skip past the posts bashing the NHS.)

There are drugs which work for prostate cancer after Zoladex stops working, such as Abiraterone Acetate and and Enzalutamide. They are also time limited, and I've no idea if they work on your cancer. You could search on the web and ask your oncologist. Also bear in mind that new drugs may have appeared by the time Zoladex/bicalutamide stops working, so you might not be tackling it with just today's drugs.

User

Posted 17 Jun 2019 at 21:13

You may find some help here Chris

https://www.mouthcancerfoundation.org/patients-guide/salivary-gland-cancer

https://chat.mouthcancerfoundation.org/

Edited by member 17 Jun 2019 at 21:14 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Jun 2019 at 09:03

Many thanks. Very helpful prompt responses and ideas for me to follow up. My first thought was, of course, a forum for my cancer. I did go to a support group for head and neck cancer patients and met a couple of people with my (salivary gland) cancer but I found almost all the talk was about (fairly scary) operations and none about HT (and I stopped going). I couldn't find any relevant online UK community/conversations (not surprising maybe given the rarity of my cancer/treatment combination). A friend of mine with prostate cancer said this site is good with a lot of well-informed contributions so I thought I'd give it a try. But I quite understand the points made about differences. For some reason I didn't think about non-UK communities but, on joining the suggested Mouth Cancer Foundation online support group, I see there are quite a lot of conversations about salivary gland cancer so I'll have a read of those.

Thanks again.

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