I finally got my MRI report back after 10 days. The local hospital I went to is very short-staffed in radiology. They are taking an excessive amount of time to produce these reports. They used to be quite good. Not so much anymore. Not what I am used to at Johns Hopkins where I normally get MRI reports back in a matter of hours.
The report confirmed that the liver steatosis (fatty liver) is present. The lesion on the liver is confirmed to be a hemangioma that was there before. The gallstones were confirmed and fortunately, there does not appear to be any blockage.
There was an additional finding. It seems that I will have another interesting health learning opportunity. There is a 4mm cystic lesion in the pancreas which appears to either be a side branch Intraductal Papillary Mucinous Neoplasm (IPMN - precancerous tumor) or sequelae from prior pancreatitis. I am suspicious of the latter given that it is a possible Besremi adverse effect. Whatever it is it is quite small and does not seem to be an immediate issue. the recommendation from radiology to to repeat the MRI in two years. I am going to review all of the findings with the whole care team to determine next steps.
My most recent CBC at my PCP on shows HCT = 43.4 on 03/14. The previous CBC was HCT = 41.8 on 02/26. This was a drop from 45.4 after the venesection on 02/13. The 1.6 rise in HCT in just two weeks is faster than I usually see but I am just going to continue to monitor as usual. Sometimes the rise in HCT is variable. What is interesting is that the HGB dropped from 14.1 on 02/26 to 13.9 on 03/14. Good demonstration that HCT is a bit of a fuzzy number. My local hematologist prefers to track HGB as a measure for PV status. I favor looking at the whole picture as it is more informative. The LYMPHs remain a bit low but in an acceptable range. NEUTs continue to fluctuate above and below the bottom of the reference range. PLTs are well controlled in the mid 200s.
On the whole, treatment with Besremi continues to be successful; however, it is clear that 175mcg is my max tolerated dose. If it looks like the erythrocytosis rate is picking up, I will do another venesection as needed. Hopefully, rusferide will become available as an option. That will be another battle with the insurance company but bring it on! Just another hurdle to leap over.
I will be meeting with PCP and gastroenterology over the next several weeks. Will consult with hematology as well. We will get a plan sorted out for the various and sundry things going on. My PCP will be entertained that my goal to be boring remains elusive. He thinks that goal is hilarious. Great to have a doc who gets my sense of humor.
Wishing all of you all the best.
Written by
hunter5582
To view profiles and participate in discussions please or .
Thank you as always for taking us along on your journey. Truly a continuing learning opportunity, even if some lessons we’d prefer not to learn. You are an inspiring role model and we’ll be interested in your decisions and progress. Wishing you luck & success in your quest to get to boring!
Good to know that Rusf may be an option soon. I checked that pancreatitis, as you say it's on the label, at 2.2%, sec 5.6 which has "Interrupt BESREMi treatment in patients with possible pancreatitis and evaluate promptly"
I am consulting with the MPN doc about what monitoring we should do. There were no signs of active pancreatitis so I am thinking active monitoring is likely the way we will go. There are a few other rare/unlikely things the pancreatic lesion could be. We will get is sorted. promptly. As minor as this seems to be it is not something to ignore.
Hunter, is pancreatitis a symptom or a common "side-effect" of an MPN? Or is it a result of taking certain drugs? I recently had pancreatitis; I went into hospital with a week-long stomach ache and jaundice. They got me well again within three days, but they wanted to remove my gall bladder, which I refused (and my GP supports me in this decision). I thought it was just one of those things, and I did mention it to my haematologist, but she didn't really react. Your post has got me thinking.
Pancreatitis can occur independently of an MPN or the drugs used to treat them; however, pancreatitis is a potential side effect from the interferons and hydroxyurea. Certain drugs in combination can increase this risk. In addition, there can be some factors related to MPNs that may cause issues with the pancreas, including thrombosis in pancreatic arteries/veins, splenomegaly/splenic infarction affecting the pancreas, extramedullary hematopoiesis in the pancreas (uncommon), and those with hypertriglyceridemia are at increased risk. Perhaps a more subtle link is the systemic inflammation we experience that has such wide ranging diffuse effects.
While pancreatitis is not common with MPNs, it is something we need to stay aware of. That is why monitoring with a CMP (LFTs), lipid panels, and other routine testing is so important. The body is an integrated system where different body systems interact. We need to pay attention to how our conditions interact and how the meds we use to treat affect us.
Elevation in LFTs can be associated with pancreatitis. Nothing that made me suspicious of pancreatitis, however. I think the LFTs have more to do with the liver steatosis. There is no evidence of active pancreatitis, just the possibility of a past incident. I asked my MPN care team whether we should monitor lipase/amylase, which are more specific to pancreatitis. Will see what they recommend.
Crikey, Hunter, with respect, did you swallow a medical dictionary?☺️ I don't know what any of these things are; I take only aspirin and Epoietin. Interesting what you say about inflammation because I wasn't aware of any inflammation during my recent episode. The only inflammation I am aware of is around unconnected issues - spinal and musculatory pain and in my wrists, but these predate my MPN diagnosis by many years. Thank you for your extensive and knowledgeable reply😊
I hate that it took you so long to get results from the MRI, Hopefully if you have any more the results will come in a reasonable time frame. Great full for good news on your journey as always.
Unfortunately for us in the UK 10 days looks quick !! Still chasing a cervical and thoracic Mri from 3 weeks ago the neurologist Secretary must hate me as ive phoned everyday for a week.Glad to see your on top of the results and as a l ways have a plan in place to get to boring!!!
Thanks for the update. I hope the pancreatitis is easily managed or, even better, resolved.
I'm keeping my eye on Rusfertide as a possible future add-in as well, as my HCT was slow to respond to treatment and it was probably venesections that eventually made it budge (and they really zapped my stamina levels).
I like the fact you're have a "learning opportunity ". When I was working a range of words changed shape. First "problems " became "challenges" then that became "learning opportunities ". Don't know what it is now
I'm so sorry that you appear to have so much going on, Hunter. I am thankful that my MDS/MPN hardly seems to affect me. I just hope that whatever meds you are taking they keep you feeling ok. It's not so much the clinical tests, but how you actually feel on a daily basis that matters. I mean we are human beings, not lab rats.
I agree that the primary treatment goal is to live well. It is more important than to live longer, not that I object to the latter. I go to every appointment with a written agenda. The first item is always my treatment goals. This provides guidance to my care team about how we will be making decision.
Treatment goals:
1. Extend quality of life.
a. Protection of cognitive function is the single highest priority.
b. Protecting vision, hearing, other senses, and mobility/physical abilities are second priority.
2. Extend length of life (only when QOL is intact)
a. Philosophically – better to get less treatment benefit and preserve QOL with any treatment.
b. My medical POAs have specific instructions regarding my care and when to discontinue all treatment.
That makes a lot of sense. I have yet to do both mine and my partner's POAs. My partner is losing capacity, but I have got answers from him. I can't do my own POA without someone to act as attorney. Major hurdle in court overcome just yesterday, so now I can concentrate more on health and these relatively normal things that we have to do, like keeping up my friendships.
Overall, that sounded like an acceptable update. On some level, the more we are tested, the more we will find, a lot of which will be insignificant towards our health. But glad to know the various findings, gall stones, etc, don't require any attention today.
Pancreatitis is quite rare on Besremi. I looked it up and exact instances are well under 1% and possibly under 0.1%.
Regarding your HCT results, HCT also varies more from one hematology analyzer to another. There seems to be more consistency if using the same machine, so if you had 2 different machines then perhaps that explains some of the variability as well. You've had fairly well controlled HCT, so hopefully that continues. The HGB obviously is suggestive of that.
Dehydration I think can also cause HCT to look higher while HGB may stay the same or slightly decrease depending on fluid balance. Additionally, if your red cells are smaller b/c of low iron stores, your HCT could rise somewhat with a stable/dropping HGB because you are producing more cells but with each having less hemoglobin inside. Either way, it seems likely that the results you received could also simply be characterized as, "noise."
Hunter. Thanks as always for educating me via your journey. It seems whenever I have an appointment with my general hematologist and MPN specialist, I find myself referencing what Hunter said…as if Hunter is one of their colleagues, but in fact Hunter is more knowledgeable.
Sorry to hear that you have so many areas to deal with and can understand the attraction of being boring. However, thanks for sharing this with us. We can all benefit from your invaluable insights. Good luck with the Resferide.
Nothing new that the others havent said, but just to send my love, gratitude and respect to you and your guidance to us all. You truly are a beacon of light with your pragmatism and positive humourous approach! I hope your upcoming meetings pave the way to greater stability of your health and vitality. Bring on boring I say! X
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Update from a PV Newbie
