The journey with Pegasys continues to go well. I continue to have no side effects at 45mcg/week. All CMP numbers look good. No sign of any issues with kidneys or liver. The CBC numbers look really good
RBC = 6.0 - WNL
HGB = 13.3 - WNL
HCT = 42.1 - WNL - at goal and dropping a bit every 4 weeks.
PLT = 364 - WNL - lower than they need to be for goal but a very good number
RDW = 19.5 High. Has been for some time. Likely reflects small RBC size related to MCV, MCH, MCHC all a little low. Not a concern.
WBC = 3.05 - a little low. Related to LYMPH=0.76 which is significantly low, but not so low as to be a concern. All other WBCs are WNL.
SED rate = 2.0 - low normal which is a good thing. (Indirect measure of inflammation). Will take it as indictive my approach to dealing with inflammation is working.
One curiosity is that after climbing a bit in the last several months, ferritin dropped from 15/13 back down to <8.0 (too low to measure). All of the other iron numbers are consistently low with no real change. Time of day matters with ferritin, but these numbers were all taken in the AM within a few hours of each other. I am not particularly concerned but am curious about the variation. Sent a note to my hematologist to inquire. The good news is that my energy levels seem to have improved a bit.
I would like to get my iron levels higher. Given that my HCT continues to drop, I think I will intentionally pick up on the dietary iron. Not ready to take iron supplements just yet. Can't say as I care for the side effects. Provided my energy levels and other iron deficiency symptoms are OK, I do not feel the need to do anything other than diet.
In mid-December I am off to Johns Hopkins to see the MPN Specialist and the NF Specialist (Neurologist). Looking to receive more good news if the trends continue.
And just for fun - a bonfire at my cabin by the Shenandoah River.
All of the best to all of you all.
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hunter5582
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Hi Hunter great that most of your counts are doing well. My start on Peg didn’t happen on Monday after being all ready to go Now scheduled for next Monday 🤞
Wonderful news, Hunter! I am thrilled for you! I just saw Dr Michael Savona at Vanderbilt Ingram Cancer Center in Nashville. I am so very pleased! He is an MPN specialist! I had a new BMB done and lots of labs. My HCT dropped from 50.4 to 46.2 in 2 weeks. I am not in any meds. I am thinking that maybe the boluses of IV aspirin post heart cath may have impacted that, although I don’t know that for sure.
That is really good news! Having a MPN Specialist on your care team who you like makes all the difference. I did not see him on the list. If he pans out as a good MPN Specialist, be sure to ad his name. mpnforum.com/list-hem./
Glad the HCT headed in the right direction. The aspirin would not likely do that, but the IV might if your level of hydration was up. HCT = % of total blood volume that is RBCs. By volume. Nearly all of the rest of blood volume is plasma - which is directly affected by hydration. The Buffy Coat (WBCs & platelets) is only about 1%.
Looking forward to hearing how your MPN care plan emerges with the new doc onboard.
Use the recommend a doc link on the page. Here is the link for convenience.
The two lists do not synch up as the methodology for creating them is different. The MPN Forum list is world-wide and relies on patient recommendation. Glad to see this expanded as good MPN Specialists can be hard to find.
It make a HUGE difference to find a doc with both MPN expertise and the gift to work well with patients. Here is the link to add him to the great MPN docs list.mpnforum.com/good-doc/
I saw your note that ptg-300 trial is back. I missed that, good news. Do you think it is possible this might help your ferritin? (if when it is available)
I would expect Rusfertide to help the ferritin levels. That is precisely what a hepcidin mimetic is intended to do. Given how well I am responding to PEG, I am not sure whether it is needed. I am planning to increase the dietary iron and see what that does.
Makes sense you may have no need for PTG-300. Your HCT is great so no need for phleb, for which PTG is supposed to replace. More broadly it could be the new treatments being developed beyond INF could be redundant for some esp if Ropeg INF becomes an option.
Very positive. I am sure you will get the ferritin sorted and look forward to next update and another great photo which us here in the uk love to see, especially including the dog😅
Very similar in terms of efficacy but Ropeg is a slower release formulation that is injected every-other week instead of weekly. It may prove to be easier to tolerate due to its formulation. Time will tell on that. Ropeg is intended to have an approved clinical indication for PV (and later ET). Pegasys will likely stay off-label for MPNs.
My goal in using PEG to treat PV is about symptom control. I could not tolerate hydroxyurea. Phlebotomy-only worked for a while but the induced iron deficiency had adverse effects, including reactive thrombocytosis (platelets up by 200K). Controlling erythrocytosis and thrombocytosis without unacceptable side effects if the short-term goal. Hematologic remission is a hoped for goal. Complete molecular remission would be an ideal goal but I did not go on PEG expecting it to happen. I certainly hope that it will.
I am very fortunate to have responded so well tp Pegasys. I am looking forward to Besremi being approved in the USA as a first-line treatment for PV. Hopefully it will be approved for ET as well. In my view and experience, the PEG-IFNs are the superior treatment for MPNs. Hopefully everyone will gain more ready access to this treatment option.
Great news Hunter - glad Peg is working for you. I recall that my blood doc suggested not taking an iron supplement even if your ferritin is low since - if I recall correctly, he suggested iron supplements may encourage RBC production which of course we are trying to limit... I go today for a routine blood check in today - been since July that I needed a phlebotomy - hope the streak continues.
Really sounding great,Hunter. Hope your Johns Hopkins consultation goes well in December. I saw my Haematologist last week face to face and all bloods seem to be behaving. I asked if I can try a reduction in my HU from the 500 mg 7 days to 5 days, which she agreed to, so hoping it works and less side effects. Best wishes, Fran
Great news Hunter and congrats on the progress! Love the pic too.
I’m curious as to your experience with dietary iron and if you’ve noticed much effect on your levels based on how you eat. There’s iron in virtually everything but of course heme is more readily absorbed than non-heme. So when you talk of increasing your dietary iron do you focus eating more heme iron or does it matter with you (i.e. spinach, etc. has same effect)?
I concentrate mainly on heme-iron as it is more easily absorbed. I do consider plant-based, but it is secondary. It is easy to look up iron-rich foods with a simple Google search. The balancing act is to watch the fat content of what I am eating. I prefer to stick with a mostly Mediterranean-style diet due to its anti-inflammatory effect. When I am trying to up the iron content, a few go-to foods are: clams/oysters, octopus, chicken liver, and game meats like venison or elk. Turkey and chicken dark meat is another frequent item. I do eat beef, but limit it.
Plant-based sources of iron need assistance to be absorbed. The easiest way is with citric acid. Orange or lemon juice with the spinach works well. There are some tasty recipes that includes both.
It takes time for your body to rebuild iron stores. It can take several years if you are very low per my MPN Specialist. It is all a balancing act to take on the iron without eating foods that cause other problems, I was eating tuna a fair bit and ended up with high mercury levels. have learned to look at all aspects of the foods eat. I also avoid hormones, antibiotics, xeno-estrogens, and other food contaminants.
Hi Hunter! A quick question on the dosage. I know that the standard dosage that Pegasys comes in (at least the one produced by Hoffmann La-Roche) is 135 and 180 mcg. If you are using the same Pegasys, how do you measure the correct amount from that, 45 mcg?
45mcg = .25mL on the syringe measures. This is only 1/4 of the full 180mcg dose in a prefilled syringe. I use the 180mcg vials and fill my own syringes. Using the smaller 1cc/mL syringes makes getting the correct dosage easier.
Thank you! I was asking because, unfortunately, since Pegasys is not covered by any state funded programmes and there's no medical insurance in Ukraine, our haematologists have limited experience working with Pegasys and thus are hesitant to prescribe it (we've consulted with 3 Ukrainian haems so far). So my husband and me have decided that we'll just buy Pegasys ourselves and we'll be performing the injections ourselves. That's a bit crazy, but, sadly, because neighbouring countries aren't currently accepting foreign patients due to COVID we have to rely on the medical literature we can find and our own wits.
Thank you so much for sharing your experience and all the best on your journey to optimal health!
While my pharmacist does not recommend it, some people get the Pegasys in the single use vials of 180mcg then use it 4 times to administer the 45mcg dose. The PEG does not have any preservative and is not designed to be used this way. What others have described is a very careful approach to prepping the vials/syringes to ensure the vials are not contaminated. (Wiping down the vial with an alcohol wipe each time).
While I cannot recommend this approach, I do understand why some people do it as they cannot afford to waste 3/4 of each 180mcg dose when each dose costs $1,100.00 US.
I hope you find some way to access PEG if that is your preference. The self-injections are very easy to do once you know how. With Besremi approved in the EU, perhaps that would be an option to consider as well.
The standard price for a 180 mcg dose of Pegasys in Ukraine is around $135 (original certified medicine). I think the considerably increased pricing in the US is based off of the fact that the majority of patients are supposed to get the medicine through insurance.
We'll start with using just one dose off of a vial to get the hang of the treatment and will look into more economical ways to use the medicine.
I am glad the PEG is more affordable there. If you can afford it, proper use (wasting the additional med) really is safer. Sadly, some here in the USA have trouble paying the co-pay even when it is covered by insurance.
If you can get the PEG in the vials and prep you own syringe then you can use the smaller 1cc/mL syringes. This makes accurate dosing easier.
Hi there…. Second peg jab yesterday….so far so good!!!I am also using the syringe at 2.5 ml….and was instructed at the infusion center at mayo…..very easy!!!
What a relief, i got started on this…,, these posts really helped me take the leap… so grateful
Only my opinion but i would say sooner the better before low iron effects energy!!!
Glad to hear it went well. If you are at 45mcg dose, the .25mL dose is much easier to get accurate in the smaller 1.0 cc/mL syringe.
Agree about the depleted iron stores. It can take a long time to rebuild your iron levels using diet alone. Potentially more than a year. I am electing to not take the iron tablets -yuck 🤢 ! the good news is that my iron levels are restoring and I do have better energy.
I do not get short of breath, just found that my energy levels/stamina were not as good. That seems to be coming back to normal. I am increasing my exercise levels and want to lose the COVD pounds.
I remain hopeful about my response to PEG. I am about to switch to Besremi now that it is approved in the USA.
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