Today I had an appointment with my regular haematologist and we discussed the results of a BMB I had a couple of weeks ago. She had hoped to see some reduction in reticulin fibrosis but it was as extensive as it had been last year. The worrying part is that she felt that this might make my forthcoming SCT too risky.
This has really thrown both me and my husband. We still need to hear the transplant doctor's opinion and I am going to email Donal McLornan for an MPN expert opinion, but as you can imagine, this is really upsetting after making the huge decision to go ahead.
We really don't know what to think. My fibrosis is Grade 3 but I didn't know that the extent of fibrosis might affect the feasibility of SCT (although we knew that the risk of graft failure is higher in Myelofibrosis).
We are holding on to the fact that my local haematologist is not an MPN specialist but the stakes are so high that it's hard to be level headed about it.
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Jennie - what an emotional rollercoaster and understandably a shock after a lot of positives in such a difficult situation. I hope you get some answers as soon as possible. Diana
Hi Jennie. This is not what you need right now but hopefully your MPN specialist will be able to set your mind at ease. My Haematologist is an MPN specialist and also transplant specialist and he has not raised any concerns regarding my level 3 fibrosis (right from diagnosis almost 2 years ago) . However my ASXL mutation means that I am at significant risk of progress to AML and he may feel that level of fibrosis is irrelevant in my case.
Out of interest, when I was diagnosed and told I had L3 fibrosis, my haematologist said it is fairly subjective as the biopsy may have just‘picked up a clump of fibre’ and it also depends who is viewing and measuring the sample and their individual interpretation of what level the fibrosis is.
I hope you get some positive answers and are able to get some sense of peace around your decision.
Thank you Garry, this gives me some hope while I wait for clarification. It's just so hard dealing with uncertainty. Hope things are going well for you?
Thanks Jennie. I’m doing okay. My spleen has been really stubborn and refused to reduce but due to falling platelet count at the last blood test, my haematologist has taken me off the interferon and started me on Ruxolitinib. The doc is hopeful that I will be having the SCT in spring (COVID allowing). Fingers crossed that you get some good news that puts your mind at rest soon Garry
So sorry to hear of your upset. Hope you get positive news from your expert haematologist. News we don’t want to hear is always a shock but sometimes it turns out not as bad as initial thoughts. Try not to worry (hard I know), maybe your expert haematologist will have a different opinion. Thinking of you, kindest regards Aime xx😻😻
Oh Jennie, you must be feeling sick about this. I have a friend who had MF who underwent an SCT in July this year. I will contact him to ask what his level of fibrosis was, but in the meantime I hope you hear back soon from the specialist. I am thinking about you.
So sorry to hear about this worrying news. Easier said than done, but please try not to stress too much until you speak to your specialist. Here in the US, they don’t even do SCTs until you’re at grade 3, or if they do it’s very rare. And also, if there hasn’t been a change, I don’t know why your hematologist is so concerned. In other words, if they scheduled your SCT based on last year’s findings, you should be fine. Sending hugs during this most stressful time.
<<21 patients with intermediate/high risk MF underwent reduced intensity conditioning-HSCT. Nineteen had grade 3 or 4 BMF at baseline. After transplantation, all evaluable patients had BMF grade 0 – 2 for at least 12 months of follow up
I also posted this recently:
For intermediate- or high-risk MF patients:
<<These data suggest that combination therapy with ruxolitinib and interferon may prove to be an effective treatment>>
Hey Jennie, , , I'm pleased you've had some informative responses. In my experience there is a chasm of knowledge / experience between some regular Haematologists and SCT experts. Mine would never had gone ahead had I not followed my instinct and found a Transplant guru.
I think were talking about fine margins when it comes to fibrosis sampling and I think Garry is right in his analysis. I also think it's not right for your Haematologist to cast doubt on or contradict your future treatment plan in place without first consulting the expert because some of the success of undergoing Transplant is the recipient being totally committed going into it. Not having their confidence undermined at any step, of the way. I'm actually surprised you're not under the sole care of your Transplant consultant at this point. There's no way I would of bounced between them with what is at stake. And I would press for that to be the case.
In short please take a step back and wait until you get chance to consult with Donal.
Thank you for these thoughts. I had assumed that I am still under my local haematologist because the transplant hospital is some distance away. Until now the local one has always been quick to defer to MPN experts and her role has been to monitor me while waiting for the transplant. I spoke to my transplant nurse this morning, who was more reassuring about the steps they can take to make graft failure less likely. Later, my haematologist called (I think she was taken aback by how upset I was yesterday). She has spoken to the transplant specialist and he would like to look more closely at my bone marrow, analysing it at Southampton rather than just looking at the pictures from my local hospital's analysis. There is a suggestion that my Ruxolitinib dose could be increased to try to improve my fibrosis.
Although I like my haematologist, I do think she should have left all this to the Southampton team.
Next step will be to email Donal for his perspective. I am lucky to have three different hospitals involved but perhaps, as you suggest, the involvement of my local one, Dorchester, should be minimal.
No probs happy to be supportive as much as possible. I just want the best for you both physically and mentally going forward into your SCT , , I was content to leave the detail up to the Transplant team and was happy for them to direct me. I found this was easier with one point of contact.
Try and put things to one side and enjoy family time over the Festive period.
Most of what you have written about is new information to me.The gist of it is that this next period in your life is extremely stressful and uncertain.
I have read quite a few positive replies, they I hope give you comfort.
All I can say is that you are in my thoughts and I am hoping all will have a positive outcome.
You are emailing an expert. I do hope he can give you peace of mind and that Christmas will be a joyous one.
Sorry you have had that Jennie and what sounds like thoughtless and inexperienced comments from your local consultant - it is very much in the hands of your transplant team that have all the necessary experience and expertise to deal with this for you- I know from previous chats that you were referred to my hospital in Southampton for the SCT - do know there are a number of very experienced MPN specialists within the oncology team so I wonder perhaps do you need to be in their hands all round moving forward ? - they are very good at telephone appointments too as I know distance is a challenge so that could help for assistance at times - the medical secretaries are also so helpful and kind - I wonder if you should be in touch with the Southampton team for advice and negate the worries you have been caused. All the best dear
Thank you. I think that is sound advice and even if it turned out that the transplant was not possible I probably would be better off being cared for entirely by MPN specialists. I do have phone consultations with the team at Guy's, but Southampton is reachable even though a 70 mile drive. Thank you again, Jennie
Praying you get the answers you need to hear and that the expert opinion can give you all the clarification you seek after having made such a huge decision to go ahead.
Wow!. Not the news you want hear anytime, but especially having made the monumental decision to go for SCT. Hopefully when you see the transplant team and MPN specialist they will give you more positive news. Thoughts and virtual support is with you.
So sorry you are having a difficult and uncertain time,sending you my Very Best Hopes for a positive solution. Awful time for you Both,thinking of you.😍
Sorry to hear about the worrisome news. I think you are correct that you need to talk to the transplant specialist to really get a read on this. I hope you get an answer soon. thought and prayers headed your way.
I know it’s not much but I to have extensive fibrosis donal is my doctor despite hearing the same from local doctors my stem is going ahead amd my fibrosis was not a problem my blood clots however are and stem is extremely risky for me try not to worry I know it’s hard best of luck
Thank you for sharing this - the part about your fibrosis not being a barrier is reassuring but I'm really sorry to hear that you are having to deal with blood clots.
Jennie, I asked my friend who recently underwent SCT, but he had no idea what grade of fibrosis he had. He too had Donal McLornan (and Prof Harrison) as his consultants. As everyone is saying, let's just see what the specialist says. Nevertheless, I know it will be a worry for you and I only hope you get some clarity soon. I am thinking of you. x
It has to be difficult when you hear conflicting opinions on your condition. I would wait until I received the final word from the person in charge of the SCT. I always thought that significant fibrosis was the reason for the transplant. Praying for you that you can proceed with the SCT and for a successful outcome. Keep the faith.
Hi Jenni, thinking of you through all this uncertainty how stressful for u. Try to hang tight until you get to speak to the SCT specialist and I hope this is soon. B
So sorry to hear this, but clearly the MPN specialist will know more. So difficult after making the big decision to go for it. My thoughts are with you.
Hi sorry to hear you and your husband have been upset I hope when you go to your next appointment you can find out more answers keep strong and take care best wishes Poppy
Jennie... just a thought.... I've recently been diagnosed with myelofibrosis (was PV) and the results from the BMB was reticulin fibrosis grade 2-3. I have no symptoms and not deemed ready for a SCT, but surely if grade 3 fibrosis was a problem my consultant would be considering a SCT before the fibrosis got any worse. I'm a patient at Manchester Royal who seem to do plenty of SCTs. Thinking of you and hope you get answers soon. X
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