I recently met with my specialist. I've gone to a number of doctors and tend to dig pretty deeply into the data. But I do love this one, incredibly knowledgeable, and in conjunction with my own research and this incredible website and group, I feel like I have some control back.
I strongly pushed to discuss Jakafi, but it's still very early for me to do this, especially with a so far stable alele count around 15.
Once on Besremi my platelets cratered back to a healthy level where they have remained. However, my HCT has climbed requiring phlebotomies every 81 days on average.
The doc showed me some more recent data that really showed that it really can take 2-3 years for the Besremi to work. It's slow. Slow and steady, as the message as been repeated here frequently. But roughly 2/3 in his data set has a CHR after 3 years.
In response to this, I showed him my RBC graph. RBC really should move along with HCT.
If you look at the graph, the drops are each time I had a phlebotomy. Each peak has roughly been lower than the last and each low has been lower than the last. I'm actually due for a phlebotomy in the next week or 2. HCT at 44.3 currently so this will hopefully drop to a new low, getting every closer to the normal range. We're speculating that the RBC needs to be lower in order for the HCT to climb at a slower rate. But we're getting to that point.
I have seen some data from others who seemed to hit that at around RBC 5.0-5.5. I'm curious if others look at their own data if they see anything that corresponds with this. Hopefully this isn't just wishful thinking.
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The good RBC trend continues smoothly from your last post. It's a neat way to track the RBC and effect of phlbs.
I don't see a visual influence on RBCs from the Bes in the plot with a constant radius throughout. By climbing HCT you mean more frequent phlebs, is that right? They seem to get more frequent early 2022 and stay like that from there.
That 2-3 years for effect your Dr states is hopeful for future progress on the HCT.
Looking at my data I’m 2022, I wasn’t getting more phlebotomies or even going to the doctor more. But I think the impact from Besremi on RBC counts take time. The accuracy of the rbc may have some noise which made for less consistent results.
For example, one month after my last few phlebotomies, RBC counts have dropped more than any other time. The impact from each one may be growing if Besremi is effective. At least this is my theory and hope. If the trend continues it could still be 10 more months before I get back into the mid point of the range of normal RBC counts.
Also, I wasn’t sure what you meant by thus-
“I don't see a visual influence on RBCs from the Bes in the plot with a constant radius throughout,” could you expand?
The graph is simply an excel file with a best fit trend line.
From some other data I have seen, it seems possibly the response for some on Besremi is slower at first, and more pronounced later, at the 1-3 year mark. I’m on a single sample which is why I’m hoping others on the drug might also plot their data.
The visual I looked at was that best fit trend line. It is helpful to see longer term effects. From its shape, there appears no near term effect on the RBC trend, the arc of this dotted line being constant before and after starting Bes. But you say your PLT was greatly improved on the Bes, so the arc for PLT should look very different. For your PLT it's clearly having an effect. Thus with time that can hope to start to affect the reds too.
In the prior thread we discussed the various plots too, including MCV which is part of the HCT equation. Your MCV did show a response to Bes. My RBC and HCT here from that thread. But as but as with so much of these things, definite answers are elusive.
I have been looking at your data and thinking about it. There are probably two reasons why there is no obvious pattern. The first reason is that you were never on any of the drugs for more than about a year and more importantly, your red blood count was already in the normal range. So I’m not sure it really has anywhere to go.
You're right, this plot from before shows a full reduction in PV indicators before starting cytoreduction. Both Neut and HCT normalized on their own. The high readings had ~4 repeated tests over a couple weeks, so it did look like PV at Dx. But only PLT needed the HU to go down so looked like ET. My guess is the long covid was affecting things. I asked my MPN Dr about this normalization, he had no comment.
All three meds have kept a lid on counts, so my plots don't show much of a pattern.
You may be a good candidate for the combo IFN/Rux if it's an option.
Your numbers just normalized much faster....at least HCT. It's remarkable to me the different speeds that people improve (or not at all)...even if they started from a similar point of progression.
My doc was open to the IFN/Rux combo and thought it was a rationale discussion. His argument on waiting, which I thought made sense, was that Rux has some cumulative disease concerns (skin cancer, infections, etc), so if the Besremi results in CHR, there's no reason to add the Rux, and there are some indications that perhaps my HCT may yet still improve.
I also explored the idea of using Inf/Rux for a short period of time, perhaps 3-6 months to accelerate the improvement, and then drop the Rux and just use Besremi. If the RBC wasn't changing, I probably would move forward with that. But rationally something is happening. The RBC is clearly changing gradually, although it seems to be speeding up (you can see this in the slope of the average line).
I see him every 3 months now, so will update the next time I see him and will update here as I think it could be useful for others.
I would love to see your numbers. It’s a small sample size, but it would be useful to know if rbc trends are an indication that HCT may improve in the future and st what rbc level does that improvement tend to begin.
it’s hard to say much about this without seeing graphs of your other red cell, lines,Hct,Hgb, MCV, and even whites and platelets and AB ideally on same graph. Your graph implies your on Bes 4 years , is that correct, I’ve heard of Peg taking 2 years at high dose to sort reds but not 4 years, also what has been your dosing over the 4? Years.
It’s meant to be a marathon but maybe 4 years is a bit slow if I am interpreting your data accurately
I have attached the other data. On the first graph I originally posted I marked the Bestemi start date. I have been on it 17 months. It’s an orange dot in the graph.
I have also attached images of other trends and the same start date marked- you can see it in the graph key as well.
Ah, the important bit here that wasn’t clear to begin with is you’ve only even on Bes 17 months, I was looking at the graph which goes back 4 years and assumed it was all on Bes.
17 months isn’t that long for interferons to achieve CHR, I know other patients in similar situation to you, one on Peg took 2 years at 180mcg to stop venisecting. Your counts are going in the right direction so it’s maybe best to hang in there.
Re adding Rux and your concerns, I am on Rux and no infection or skin cancer issues, I have discussed these points with my expert at Mount Sinai and they say some have infection issues and some don't, I will add those with MF can have more immunity issues, they reckon Rux doesn’t cause skin cancers but previous HU use and sun damage is the likely culprit.
Lastly your AB of 17% is good for 17 months but some can also achieve that on Rux, I just had mine tested at Mount Sinai and it 1.08%.
So adding some Rux even temporarily could be an option but if your counts continue to improve then maybe best not rock the boat. As in if not broke don’t try to fix it. Dr Gisslinger gave a talk at the recent doc conference in NY and his message with Bes/Peg was not to rush and blow it with too high doses causing side effects.
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