MF

Hi, I am writing this on behalf of my husband who has MF. Both medications have stopped working now to a degree, Hydrea and Rux. My husband is to start radiation treatment next week to try and shrink his spleen which is massive. His platelets a couple of days ago were only 65. His specialist wants him to have blood administered in two days time, which will be the first transfusion for him. I am wondering if this is now the beginning of regular infusions. I don't contribute much to this site, but I read everything that comes through and it seems that once the blood trans start it is then just a continuous thing that happens. I wonder if anyone on this regime can let me know.

Thank you

Shoosh

[JediReject]

Hi Shoosh .... Hey Im sorry that your mans meds are not working I know the feeling as my Ruxo hasn't done anything to reduce my spleen but so far I haven't been offered an alternative treatment for it. Do you know how large his spleen is and what type of transfusion is he to have, is it platelets or red cells. I had a red cell transfusion about 4 yrs ago now and I haven't yet needed another. Apparently its best not to have too many if you are a potential candidate for BMT/SCT. I cannot say whether he will be transfusion dependent you will need to ask your Hem as everyone has different needs with their MPN. . I don't know if he could jump on any trials that may be recruiting depending whereabouts you reside.

Cheers JR

[Hidden in reply to JediReject]

Hi JR

Thanks for your reply. I can't give you a size of the spleen, but the radiologist said it was 10 times larger than it should be. Now he is so uncomfortable with it, that he is hardly able to eat, and all the other organs in the general area are being squashed. As far as I know it is a red cell transfusion. I didn't like to ask the specialist in front of my husband regarding continuing transfusions, because he is already depressed enough without hearing anything more detrimental. His Rux has been halved a month ago and it was then that the platelets dropped to an all time low. We live in Australia.

Regards, Shoosh

[JediReject in reply to Hidden]

Well Shoosh, , , what can I say after you tell me all that except that from what you say your guy seems to be getting decent treatment and is on the latest front line drug in Ruxolitinib but he like me is unlucky in that it hasn't had the desired effect especially in shrinking that huge spleen of his. And if he's anything like me it's quite hard to bear up to sometimes as you just wonder where you go next with it all.

I decided to ask for a kind of second opinion and am being seen at another hospital 60 kilometers away. But you might be seeing the best Hem in Aussie and if you're not I guess it could be hundreds of kilometers away. Please let me know how you go on as I will be thinking of you both. I hope all goes well for you.

Cheers JR

[cheridiane in reply to JediReject]

Hi again JR. Thought I would let you know that my husband is now 7 weeks into the radiation treatment, and it has shrunk his spleen from 26cm to 20cm, maybe even less now. He is a different person, stomach is now not bloated, he can eat a decent meal, no longer coughing continuously, and has heaps more energy. We have another 6 weeks to go with the treatment, so it's all looking good, and he is so much more comfortable.

Regards

Shoosh

[JediReject in reply to cheridiane]

Hey Shoosh, , I just happened to be on line. .Thanks for the update. I am so pleased for both of you that your hubby is having success with his latest treatment. . . It isn't nice coping with a huge spleen and the problems it can bring. Let's hope the next 6 weeks brings even more relief and most importantly lasting relief.

My spleen is about 20-22cm but I am only a 'wee chap' so it pushes my belly out giving me a pregnant look. . Not great.

Very best wishes JR

[JediReject]

Meant to say the Rux lowered my platelets to 79 so dose was dropped slightly and they are now 105....

[hackett]

Hello Shoosh. I have little positive or constructive to add or offer this stream other that to say that we are thinking of you both. It is disappointing that the roxo has not had its desired effect. May ask where in Aus you are? I nominally live in Canberra but am wintering in Brisbane with the hope of minimizing the itches. I have an active PV and am trying to persuade my Haem to help me try Ruxo. Again i say I am sad that all I can offer is to say we are thinking of you and send our warm greetings Hackett

[Hidden]

Hi Hackett

Thank you for your reply. We live in Western Australia, a small town called Denmark, 400k's south of Perth. I hope you are able to get the Ruxo because it worked very well for my Husband for some time. For others it seems to work very well continuing. As I mentioned in my earlier post my husband was to be given blood last Friday which happened, and it has brightened him up considerably. Today he starts the radiation treatment to shrink the spleen. Hopefully over the period of 3 months which this procedure is going to take he will feel a lot more comfortable.

Good luck with your quest.

Shoosh