Has anyone had a bone marrow transplant who has PV?

[tracey13]

My husband has PV he was diagnosed in 2012. He's had a scan and his spleen has doubled in size. He's had to have a bone marrow biopsy.

We have got the biopsy results back today. His bone marrow has a lot of scar fibrosis so he is referring him to the RVI Newcastle for a bone marrow transplant.

We were totally shocked as we thought he was going to change from hydroxy to ruxlitnib.

We would be very grateful on any advice about the bone marrow transplant.

Has anyone on this forum under gone this treatment?

Many thanks Tracey

[AMD6yr]

Hello!

I, too, have pv, and in Nov they discovered my spleen had enlarged to fill the left side of the abdomen and the liver enlarged to fill half the right side!

Univ of CA Davis in Sacramento, CA has not ordered a biopsy nor recommended a bone marrow transplant but your husband's case may be different. I have not had any gene testing JaK2 (or whatever that gene is,) but am on a "watchful wait" with possible increase in Hydroxyurea to take 500 mg 4 x a day from the current 2x a day and increase the frequency of the phlebotomy procedure to lower my hemaglobin reading. Was told the spleen COULD diminish, or stay the same, but wasn't a life-threatening situation and the discomfort will subside as the spleen "heals". Have pain meds, but haven't had to use them as much as expected. Sure hope they're right!!! Where is RVI Newcastle? Are you in the USA or UK? I see my local oncologist this week; see what he says....PLEASE KEEP IN TOUCH and let me know what is happening with your husband.

[tracey13 in reply to AMD6yr]

We have been worried sick.

The consultant said hydroxy won't reduce the spleen but ruxlitnib will and it will make him feel better . However the scaring can't heal therefor a transplant would benefit him and get rid of the blood cancer

I was wondering if the PV had progressed to MF.

We will find more out once we see the specialist team hopefully in January.

It's all a worry but for the long term he can be free of the blood cancer.

I will keep you posted.

[tracey13 in reply to AMD6yr]

We are in the UK.

Ruxlitnib is a better medication for treating the spleen to reduce it back down to size.

Hydroxy won't deal with the spleen as that just slows the bone marrow down whereas ruxlitnib is an inhibitor and it's stops the cancer.

It's not a cure by far.

Hope you get sorted out soon.

Tracey

[MFBMT2011]

Had a bone marrow (SCT-Stem Cell Transplant , same thing) for Myelofibrosis 7.5 years ago in London. Happy to chat or provide any info’ that can help. One of a few here who have been through it. Email me on [e-mail] if you would like to make contact.

Chris

[tracey13 in reply to MFBMT2011]

I will let my husband know Chris thank you.

We are just so worried about the whole process.

He's worried about being out of work for a long time.

Tracey

[tracey13 in reply to MFBMT2011]

Hi Chris , my husband's copy of his letter has just came from the consultant appointment he had on Monday his PV has progressed to post polycythemic myelofibrosis. So I'm guessing he's now got MF.

Tracey

[MFBMT2011 in reply to tracey13]

Both ET and PV can progress but only a small percentage do. Ready to help when you need it.

Chris

[Tico]

Hi tracey13,sorry to hear the news,have they now changed is diagnosis to post-pv myelofibrosis?.tina

[tracey13 in reply to Tico]

Hi Tina they didn't say I think PV is primary and secondary is MF but I could be wrong.

[Tico in reply to tracey13]

Hi tracey13, l really think you need to talk with your husbands cns,could you perhaps phone her,most are quite happy to explain everything going on & put your mind at rest & exactly why he's being referred. Their as to be a lot taken into consideration before any decisions are made regarding the best possible course of treatment. I know it's easier said than done but try not to worry & try to not let it ruin your christmas. Sending you & your husband very best wishes for christmas & 2019.x🤗

[tracey13]

Hi Tico,

The consultant explained that he was only young and the long term out come to get rid of the cancer would out way being on medication.

He has referred my husband to the transplant team so we waiting for that appointment.

If the option is open to trying ruxlitnib for a few years first then going for a transplant my husband would be much more mentally prepared for a transplant.

His bone marrow has shown a lot of scaring fibrosis not sure what the limits are etc. It not urgent for a transplant .

My husband is 46 now he said if he can go on ruxlitnib for the next few years and he feel good on it he would rather take the medication than jumping in straight away for the transplant.

The only symptoms my husband has is exhaustion and fatigue apart from this he's fine.

Tracey

[Tico in reply to tracey13]

Hi tracey13,their is so much still to be discovered about mpns & indeed being discovered all the time,same go's for new mecications. When you have the appointment through you &, your husband will be able to decide the best way to proceed. Atb, tina.🤗

[lavender007]

I hope someone can help you who has experienced BMT, wish you luck and hugs.