I’ve spoken with the specialist nurse from haematology this morning, my iron infusion has helped my anaemia but the consultant wants me to have another bmb after Christmas, and to actually go in and see the consultant in person (will be the first time since January 2020) to discuss the results approximately 4 weeks after the bmb. I’ve been having spleen pain, however the ultrasound I had on Tuesday showed it wasn’t particularly enlarged (11 cm)
I asked if she thought the ET was transforming she said maybe as there was some fibrosis in the bmb I had 3 or 4 months ago, I said to MF she said oh it could be leukaemia! So obviously I’m very worried about the prognosis now.
I know transforming to leukaemia isn’t common but not impossible!
Anyone else in this position? Any advice appreciated.
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lizzziep
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I know you’re feeling scared right now but try and stay positive. I wonder why she thinks it’s leukemia? I thought I was having spleen pain for a few weeks. I went to my hematologist and she said it wasn’t my spleen and she had me go down to the emergency room to get a CAT scan. My spleen was fine. It’s 13.2, but I was having some digestive issues which I’m working on. Changing my diet has really helped.
I wish you luck with your upcoming BMB and your results. Let us now.
Thank you. It was the nurse I spoke to and I’m not sure she’s up to date with the fact it’s rare to transform to leukaemia, as she has mentioned it before, when I had my last bmb she said it was to check the ET wasn’t turning to leukaemia. I’m hoping she hasn’t got the idea from something the consultant said. I have got gall stones as well, the ultrasound technician said everything else in my abdomen looked ok except the gall stones. The pain under my ribs seems worse when I’m sitting down, it seems to fade when I’m active.
I try hard not to invite trouble. I decided a long time ago not to worry about something until I know I have something to worry about. Then I find peace and strength by turning any worry thoughts that do arise over to God. Learning all I can about what is going on and what maybe happen helps me, but I do that in the light of knowing what may happen isn’t what has become reality. I like to stay in the now and let the future evolve when it does. I just live one day at a time. I don’t know if it helps to share my thoughts with you or not, but I hope you will be encouraged. Take care.
You are correct that it is rare for ET to transform directly into AML. progression, when it occurs, is usually though MF. I suppose that in a sense they are checking to make sure you are not moving in the direction of AML, but the way the nurse worded it seems a bit sloppy and understandably worrisome. You might want to ask your care team what they would expect to see in your blood work regarding leukemic transformation. The BMB is not the only way to monitor your status. The BMB would definitely give information about the level of fibrosis.
I hope that you get the abdominal pain sorted out. Gallstones can be quite uncomfortable. It can be hard to sort out what is the MPN and what is unrelated since symptoms overlap.
Take a deep breath- hold it for 5-8 seconds, slowly release it, and then repeat. Keep doing this as often as you remember [& as long as you're feeling anxious].
Anatomy first- in addition to your spleen being on the left side of your abdomen under your diaphragm, there is also your stomach, some small intestinal loops, the splenic flexure [corner/bend] of your large intestine, and a little bit further back and a bit lower down, is your kidney. Any and/or all of these could be the cause of your pain, or equally likely none of them are.
Your gallbladder and any stone[s] contained therein are in the right side in mirror image of the spleen- same differential applies, less the stomach.
Some character questions: What does the pain feel like, where exactly is it the worst and is it tender to push there, or does that make it feel better, what triggers it, or is it constantly there, has it changed your appetite or ability to eat normal amounts of food? Early satiety [feeling full too soon] and decreased appetite seem to be the hallmarks signs/symptoms of splenomegaly, but other things can also cause them.
A heating pad is one of the best, though nonspecific comfort measures for any abdominal discomfort.
What have your last few WBC results been?
Even early leukemic changes will likely be heralded by progressively elevating WBC counts. That is where the name comes from after all: 'leuk= white, emia= blood, thus leukemia= 'white blood'.
Again, remember to breathe!
I'm hopeful that your BMB will be fine, and that this is much ado about not all that much, but one way or another, you'll always find support and caring here, so God bless and don't worry [any more than you absolutely can't avoid 😟].
Thank you. The pain/pressure is worse when sitting down, fades when moving around. The ultrasound I had on Tuesday showed my spleen was 11 cm. I haven’t got my full blood results. I’ve been trying to get onto my hospital portal to access my results but have to have confirmation from my go practice and have been waiting months for them to do this. I’m going to call in tomorrow (again) to ask them to sort it out. Since it’s been phone only consultations I’ve only had platelet numbers, which were 575 this time, they’ve gone up since my Anagrelide was reduced to try and help with my anaemia. The pain isn’t bad much more like I can just ‘feel’ pressure or something in that area. Sometimes it seems to spread down below my waist towards my hips. I haven’t been eating as much recently, filling up quicker, not decreased appetite though, I haven’t lost any weight although I could do with doing so!
It's hard to say anything without more information, but I agree that you should dog your GP's office to get you access to what is after all YOUR information.
It sucks that you even need to ask for permission- around here, they're almost too far in the other direction [but not quite 😇].
It could well be your spleen that is causing the symptom you are having, because the imaging results are operator dependent and also because despite a spleen having a "not big enough for symptomatic splenomegaly" measurement, it depends on your anatomy.
For instance, on my U/S, my spleen was read as borderline for splenomegaly, but I'm over 6' tall and well past the north side of 200#. As a result, neither my MNP MD nor I think I need to have any concern about the possibility of actual splenomegaly [at present].
Of that, most of my height is taken up in my torso- in contrast, my 'little' brother, who is actually a few inches shorter than I am, has to wear pants with an inseam that is at least 2 inches longer than my usual 32" [33" on a tall day ;-)] inseam because his height is mostly due to his long legs- i.e., he is more short-waisted than I.
so, especially if you are relatively petite, and fall on the short-waisted side of body proportions, it would certainly be possible that your symptoms are from your spleen.
The question of what now, is best left between you and your MNP MD- although I am becoming more and more a proponent of the INF route [and no I don't have any financial interest in any of the treatments for MPN's]- it's a pity I don't though....
"Pegylated Interferon Alfa-2a Yields High Rates of Hematologic and Molecular Response in Patients With Advanced Essential Thrombocythemia and Polycythemia Vera"
"Pegylated interferon alfa-2a for polycythemia vera or essential thrombocythemia resistant or intolerant to hydroxyurea"
Wherein it states: "This study represents the largest global effort to date to investigate the role of PEG in patients with high-risk ET or PV refractory to or intolerant of HU therapy. PEG was shown to be an effective therapeutic option to treat such patients inducing an ORR at 12 months in 69.2% and 60% of ET and PV patients, respectively.
CR rates of 43.1% and 22% in ET and PV, respectively, in this study were lower than those in prior reports... which may be explained by the broad inclusion criteria, ITT design, and international accrual. In addition, patients enrolled in this study had higher risk features, such as advanced age, prolonged disease duration, and a high prevalence of splenomegaly...
We did not identify any predictors of clinical response or observe a relationship between the dose of PEG administered and the degree of clinical response....
Response rates according to driver mutational status were evaluated, and only the presence of the CALR mutation was associated with a superior clinical, but not molecular, response... "
This is a commentary by Mary Frances McMullin, on the above, and a specific comment she made bears repeating: " Ruxolitinib is another therapeutic agent that has been used to treat HU-resistant or HU-intolerant PV and ET. Significant responses have been seen in PV,9 but it was not superior to best available therapy in ET."
That was a really good explanation of your anatomy. It explains a lot. Also, breathing exercises are a really good idea. Sometimes I need a reminder to do that, as well. Thank you.
Hi lizziep try not to worry easier said than done hope your BMB appointment comes quickly then you can get some answers try to enjoy Xmas and sending blessings best wishes Poppy
I also have/had "spleen" pain with a ~10cm spleen. My dr said it's digestive gas, and no worries. When I asked later he said you already asked and same answer. So I'm convinced. Doesn't mean you have the same but it is one explanation.
On the other issue, for your consultant to raise such a prognosis without any explanation or test results to support it is wrong. Wishing you good success getting detailed info from your care team. As an example you should have access to the fibrosis level (a number) that they found.
Hi Lizziep - will keep you in my prayers. Hopefully there is a rational explanation for all of this - that does not include any progression to MF or AML. Sending well wishes!
as someone who was once wrongly told my ET was turning into AML (by a team of doctors not a nurse!) I’d say there is a lot of confusion around this. Have you got your latest blood results? It should show your blast cells % which is what my current doctors say points to leukaemic transformation. Hopefully that will be zero.
Thank you. I wasn’t happy about what she’d said and phoned haematology this morning. She said maybe she shouldn’t have inferred it was changing to leukaemia. The consultant actually wants a bmb to check whether there have been any changes since the one in July, which showed some fibrosis. I also asked for my white cell count numbers and they are in normal range.
We have to be our own best advocates- because even the most awesome, caring, and astute treatment team doesn't know everything, doesn't experience what we do, and also probably have a metric sh*t-ton of other patients- all of whom they have to try to treat equally awesomely.
It's also great to learn that your WBC's are still normal, it's not as diagnostic as the blast number from BMB, but it' definitely a good sign!
I am in a slightly similar situation. Haven't had a face to face appointment for my pv since the end of 2019. However one has been booked for early January following my phone appointment this week when I learned that my white count has shot up to 43 after being in the high 20s for most of the time since diagnosis in 2017. I'm hoping the increase is in reaction to a recent spinal fracture (my 4th one since diagnosis of pv) I've yet to receive the full print out of the rest of the results from this blood test but the previous one 3 months ago showed 0.29 blasts and teardrop cells. Ive only ever had one BMB and that was 3 years ago and showed grade 1-2 fibrosis but specifically said, not transformed to mf. My spleen was last measured at 13cm but has been very uncomfortable recently. I am putting this down to the fact that this latest fracture has caused me become very bent over, squashing my internal organs.
Goodness me you have been through it! I hope you’re recovering well from the fracture. I wondered if my spleen pain was because I sit a lot as I have bad arthritis in my knees, it seems to be better when I’ve been moving about.
It seems that your nurse is quite unprofessional. There’s no way of knowing what is wrong until all the test results are known. Haematology is a difficult specialty in an already difficult profession and this person is making assumptions before the results are out; that just screams “unprofessional “.
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