Tamoxifen : Hi I have been asked if I would be... - MPN Voice

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Tamoxifen

Skye333
Skye333

Hi I have been asked if I would be interested in doing a trial. I take Ruxilitinib for MF and the trial is to take Tamoxifen as well.

I have read all the information I have been given and although I understand that I might not be accepted due to lots of reasons (I hear they are quite strict) I wondered if anyone on here has also been asked or if anyone has any advice at all before I decide whether I will do it.

I have said since my diagnosis 2 years ago that I would seriously consider any trial I am offered.

Janet x

13 Replies

Morning Janet

I also take Ruxolitinib for MF and at the moment it doesn’t seem to be working quite as well as it did. When I see the haemo in November he said if my platelets were still going up or at the same level then he would give me an additional tablet which I presume to be HU bit of offered the Tam then I think I would take it.

We have to go by the advice of our specialists most of the time I think x

Skye333
Skye333 in reply to Graham7694

Hi Graham my bloods are ok at moment although hb steadily going down. I was surprised they asked me as I’m only early stage. Maybe because Tamoxifen is already established as a post breast cancer drug. I’m not sure what it does to the cells but I will ask all those questions when I go back in 4 weeks.

Janet x

Hi Janet, I’m stage 3 MF (post ET) and taking Ruxolitinib with stable bloods.

A couple of appointments ago I was down for the Tamoxifen trial but couldn’t take part because I’d had a DVT following a BMB two years ago.

Strict rules I guess.

Skye333
Skye333 in reply to Norman45

Hi Norman that’s a shame for you. They must be using all the stages. That will be very interesting.

Janet x

I was asked to take part in the Tamoxifen trial back in March. I am ET JAK2+ and I agreed, all the premilinary tests were done but in the end I was not suitable because I did not have enough of the JAK2+ mutation in my blood. So the criteria is strict. I wouldn't have minded putting up with Tamoxifen for 6 months if that would have done something about my ET and reduced the need for Hydroxy. I am on 9 tablets a week presently.

Skye333
Skye333 in reply to Searcher56

Hi I knew it had been running a while but I thought it was MF patients who were asked. Maybe when all the tests are done you might qualify to take it.

Take care

Janet x

Yes, I was asked to take part in this trial earlier this year. However after blood tests was told I wasn't suitable

Hi.

I have pv so this might not help.... just on aspirin and venesections 3 monthly.

I also have a moderate risk of breast cancer. It was suggested by that consultant to take tamoxifen as a preventative but my haematologist said no as there is a greater risk of blood clots with tamoxifen.

So its been suggested that I take anastrozole instead which will b fine if I need to start taking Ruxolitinib.

It’s all so individual that we have to talk to

I had a look at the inclusion/exclusion criteria for this trial and didn’t even bother to apply as my platelet count is too low amongst other things

From information received at the forum and after reading the restrictions, I would grab the opportunity if offered. Sadly, two of the restrictions are having suffered TIAs and stroke. I was really hoping I could take part in this trial because it is assessing the possibility of reversing the gene mutations. Please let me know if you manage to take part and the outcome. All the best Penelope

Skye333
Skye333 in reply to JackLina

Hi Penelope I am thinking of going for it. Although it does seem a very strict criteria. I will definitely post the outcome of the tests.

Janet x

JackLina
JackLina in reply to Skye333

Brilliant. I so wish.......

I looked this up and found that this drug is used for breast cancer..

But my question is..which is the best..Hydrea vs Jakafi.

This all seems like a roulette wheel of meds and the doctors truly do not know which way to turn.

I guess this is why it is called the “practice” of medicine,

👍🏻

Sheryl

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