I am writing on behalf of my mother who was diagnosed with PV back in 2002. The symptoms started with her in 2001 but it took over 1 year for my mother to get to the right hospital, a specialized Hematologic hospital of the Ho Chi Minh City and she was put on HU since then, until recently, as a BMB showed that she had Myeleosis Fibrosis grade 2 post Polycythemia Vera, with following NGS: JAK2 vaf 78.9%, TET2 vaf 39.1%, TP53 vaf 4.3% and ASXL1 vaf 6.8%. She is now 63 yo.
The situation in Vietnam is quite different than what I have seen many seniors here with MPN, espeically PV and MF post PV in the US and UK have experienced. We are quite far behind in getting the new drug.
My mother had her first BMB in 2002 but only recently, in April 2022 doctor decided to gave her another BMB to find out that she was MF second grade post PV. It was not until last 3 months when my mother complained about her recent motion sickness when driving car to the hospital (which never happened before), a substitute doctor (younger) decided to get her to check NGS and advised her about taking Ruxolitinib. Ruxolitinib have been available in the US since 2011, FDA approval but only in January 2021 that Novartis got permission from the Ministry of Health to distribute this drug, with sponsorship of 50% (social insurance included), and it came out about 1400 USD monthly for the use of this drug, paid by patient. And only recently a doctor just got to know about it and advised my mother to use as her disease has progressed. And only about 20 patients got to use this Rux in entire Vietnam, for a population of 100 million, that is quite very few, given that there are many patients who also have MPN but mainly they are not yet informed and/or are not capable of paying such huge amount each month, considering this new drug has not been covered by social insurance entirely.
I came to learn that even though the doctor said she has bad prognosis (the doctor did not use any model of prediction like DIPSS or anything like that) due to the TP53 and ASXL1 mutations. I have done my research work, and, with a bit of background in gene and genetic diseases, I learnt that all three extra mutations my mother has beside the starter JAK2 are non driver mutations, so if everything is managed well, it will not be bad like main driver mutation CARL or the other ones.
I mentioned that my mother is a case of interest because I would love to hear from you all, those who are having PV, and MF post PV, about your routine blood test result. My mother ever since she was diag with PV, she only has her RBC very high, while her WBC and PLT are normal. Prior to Covid last year, her blood test was under control, everything, except for MCV which can change from 88-103 and maintain in the range, and HCT under 50. However, later in the year, her WBC started to jumped up out of the range, to 9 k/UL and subsequently up to 21 k/UL (post BMB). I was really panicked during the time when no doctor could pin point exactly what she was having, all just said she might have an infection going on. This was around April 2022 and lasted toward the year end. My mom most of the time felt very tired and felt like she could leave me any time soon. However, earlier January 2023, the condition resolved on its own. Her WBC returned to normal, under 7 k/UL and maintained above 3.8 k/UL. At the time, she got some bleeding in the teeth, which was something she got on and off throughout the time with HU, and she got to a good dentist who helped her to cure the infection and it has not returned since. I do not know if the rapid raise in WBC was due to the bleeding in the mouth but as she had endured mouth ulcers on and off for many years and we have never seen her WBC to be above 13 k/UL, not mentioning to 21-22 k/UL this time.
My mother has a large spleen (I could not take photo of the result yet) and high acid uric level (400+ umol/L) She was taken blood test before the start of Rux in mid July. Doctor gives her starting dose of 20mg / twice a day, so thats 40mg a day. And in Vietnam, there are only 2 dosages to choose for Rux, 15mg and 20mg tablets. There is not any other options to choose.
This week has been her 3rd week on the drug, so far everything has been much better for her. Before she had night sweat on the back, really terrible back pain that makes her difficult to sit down and stand out, quite some mouth ulcers and tooth bleeding (which is now resolved) and tiredness, etc. some other symptoms similar to most who have PV. Now she told me that her back felt lighter, enables her to do more work and longer exercise time. I have to thanks Hunter to bring up the post about Rux and Grape fruit the other day because when I asked the doctor who prescribed Rux to my mom what to be avoided, he did not say to avoid anything. Clearly, the doctors here are also behind. To be honest, 3 weeks that I have been on this forum gives me a lot of knowledge and to a point I think I know about this drug more than the doctor who prescribed it to my mom.
My mom has been taking Amlodipine 5mg once daily and the past 2 days before breakfast, she feels a bit of dizziness and blood pressure check tells that her heart rate is 58-59 bpm (never before), and low blood pressure. So for the moment being, she has stopped taking Amlodipine and see if tomorrow the symptoms appear again. I do not know how long Rux has started to be effective in the body, and it is different for everyone else but I have read from some members here that itching ceases overnight so it must be that Rux can be quite fast to be effective. My mother told me it feels like her blood is reducing, as she is familiar with this feeling before when on HU. We are going to see the doctor again next Tuesday for a blood test. I have read on the instructions that comes with the box that in the trial it takes 1.5 months for anemia to show, but of course, it does vary.
I am a bit wary of the withdrawal rate in the studies and cohort trials of Rux but given the trials include less than 1500 people, I think it is a bit of stretch to represent for the whole MPN community, considering I did not read anywhere that trials include Asian, and which ethnicity. Living environment does play a big part and so does ethnicity when it comes to immunity and health strength in general. Considering my mom is among the only 20+ people to start Rux now in Vietnam, I would like to ask if any patients out there find themselves in my long post to chime in.
I learnt that momenitilib is due to approval in September this year but even if it is approved, it will be a very long time for the drug to show up here in Vietnam and for sure the price tag gonna be hefty, so my best bet now is to hope my mom will respond well to the drug and the efficacy will last longer than 2-3 years like what was shown in the trials.
My mom was tested HLA for a possible SCT but as she is 63 yo and both her brothers are over 60, doc said cannot get donor cells from my uncles and maybe they will post the HLA result to search for a match from community though it will be very tough in Vietnam as people here do not usually do regular check up, not mentioning to check for HLA to register in the community bank for later possible donor.
Sorry for the long post but I just want to provide as much as information as possible so that maybe knowledgeable members in here can read and comment on my wonderings here
- What else should I be cautious of when using Rux? I hope the grapefruit was the last thing that I caught up with
-Are you, PV and MF post PV, having your WBC and PLT high about the range, and not just RBC? I have read the other day that one member has her PLT to the 1050 k/uL level, which is unbelievable for me because I have never known that PV can lead to raise in all three counts, not just RBC. Her last year BMB conclusion was: increase in three counts, but if anything ever raised, it was RBC and her previous doc always focus on her HCT to be below 50, with the incident of WBC rising I described above.
-My mom RDW is 18.1 % (range is 11.5-14.7%) and she has Microcytic +, Hypochromic +, Macrocytic +++, Blasts ++, Left shift +. What I understand (from her MCV >90) is that her red blood cells are abnormal sizes, both huge and tiny and some are just premature and still circulate around. Is there something else that I am missing from this result?
-As now my mom is MF grade 2, with blood test like this and her PLT before taking Rux is 188 k/uL. , WBC 4.96 k/uL and RBC 4.06 k/uL (HU 500mg twice a day). As for prevention of Anemia on using Rux, has anyone her try using Gineng, especially the Red Ginseng? As I come from an Eastern country and have some background in Eastern medicine, I am surprised and not surprised that no study has incorporated some Eastern med in. It is like a clash, like you use Western or Eastern, no combine. Yet I think I read through a case of using acupuncture to relieve the pain here in MPN group. As for blood clot prevention, has anyone here use Natto? It is the fermented beans from Japan but its main thing is Nattokinase which dissolves blood clots — which helps maintain good blood vessel structure, improves blood flow, and lowers the risk of heart disease. It can also help lower your blood pressure, reducing strain on the heart that can lead to heart attacks (webMD). I have been eating natto on and off for a while before Covid strike and drove the price up a lot. I also told my mom to use but as she started Rux now, we wait maybe at least 3 months to see if her counts are stable before taking other supplements. For blood creation in Eastern med, besides Ginseng, we also use Panax pseudoginseng, and you could look up on GG to see how the plant is like, but for the history of Eastern med, it has been used for women for stable periods, since it has pro-blood property like Ginseng and much less expensive. Per webMD and other sites, the Panax pseudoginseng is used to stop or slow down bleeding. It is sometimes taken by people who have nosebleeds, vomit up or cough up blood, or find blood in their urine or feces. Panax pseudoginseng is also used to relieve pain; and to reduce swelling, cholesterol, and blood pressure. So my plan is, if my mother has anemia, these will come in handy, but I hope I do not have to use them with Rux.
That is for now. I am truly thankful for those who take time to read until this very end and find it helpful at some degrees to you. I hope to receive advices, and new insights to health information of my mother that I did not get to ask the doctor here (he actually does not answer much, and it is the way it is here)
Thank you and God bless you all!
Steve,
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It’s unfortunate you don’t have more local expertise where you live. It might be possible to find an expert say in US or Europe or maybe Australia or wherever that might do a video discussion, they can’t prescribe via video though. Your mother’s situation sounds quite complex and of course we are not doctors on here, so we can’t really advise re treatments etc. So be careful about taking on advice. On a simple point, you mention you only have 20mg and 15mg pills, they can be split to give lower doses ie 20 can be split in to 10 or 5 if round shape and 15 if oblong into 7.5. I have checked with a MPN expert and it’s okay to split them if necessary. As you probably know Rux can lower Hgb too much sometimes your mothers dose of 20 BID is fairly high so keep testing Hgb, you may need to lower dose, I don’t think you say what her Hgb is.. I know from MF friends that if Hgb gets too low say approx 8 they need transfusion. Also when quoting blood counts on here is best to convert to same units we use if yo want us to understand it better. I hope that helps a little bit.
Hi Ainslie, thank you for your prompt reply. My mother HGB is around 13-15 g/dL. Her most recent HGB before starting on Rux is 13.4. As for taking Amlophidile, there were 2 incidents in the pasts, roughly 4-5 years back where her Blood pressure spiked up badly my mother could not move and face was all red. Ever since she started to take low dose of Amlophidile. But given what she has been feeling a bit of dizziness in the morning after waking up, ie the blood is not so thick anymore, she stops today.
This is not the first time she stopped on her own. Dec 2021, after my mom got her 3rd dose of Covid vax, Pfizer, she also felt like this and stopped taking Amlophidile for some time, then the whole saga of WBC started.
I know each person will respond differently to the drug and so I am just wanting to gather information from people with similar background. I know a case of MichaelS that he shared he has taken Rux in 2014 since MF post PV diag in 2010 at 10mg twice a day and he is still doing very well now. I wish my mom will tolerate well with the drug and can use it for the next 10+ years.
It bothers me a bit that I overheard from nurses in the hospital many years ago that my mom situation was rather weird that only her RBC was up, and HCT, sometimes HGB and not counts. As for reference, I would love to hear from people here w PV who have similar result of blood test and are using Rux
One thing I forgot, in addition to grapefruit be careful with drugs like fluconazol as they increase effectiveness of Rux a lot, there are probably others, maybe check the leaflet in package or look online
Thank you for the info, my mom does not ever have to use fluconazol, but if there shud be any future case, I will note this. I have looked online all but thats pretty much it as the leaflet here in the drug box was translated to vietnamese and tbh, I rather read the english version of it for better understanding the terms. The translation is horrible that I really think other patients here who only speak vietnamese and do not have background of science and/or statistics wont get much from it
I'm not a doctor, but it seems to me that since she still has a partially functioning bone marrow (MF-2) that, unless her spleen is now very enlarged (20+cm), she should be on interferon instead of rux.
Unlike rux, there's a chance pegylated interferon alfa-2a (brand name Pegasys ) could stabilizer her at MF-2 and prevent progression to MF-3 as would likely happen if she stayed with rux.
Pegasys might also cause her RBC and Platelets to rise a little (good) and maintain or slightly shrink her spleen.
Hi Monarch, thank you for the information. It is quite a thing to get here in Vietnam and if we somehow manage to get the IFN, it will be totally on our own to manage it because the Ministry of Health does not authorize it. My mom did get a blood test on her own today, all numbers are good, except for the PLT that dipped into the 98k , down from 188 k before she took the Rux. What is more important is her spleen also reduces in size quickly, from 17 cm - 21 cm (doc said cannot measure correctly cuz too large) to 11.7 cm as the ultrasound today said. So quick call to doctor pointed her to cut the dosage to 5mg twice a day so to let the PLT go up. As IFN is not an option here, unless we can move oversea to live, which is not an option either, I did think about Besremi but that might be a while before it can even show up in VN. However, as ETGuy posts lately on efficacy of Rux, and some others have mentioned, Rux does reduce the allele VAF, and that is what I am betting on right now. Third week and she has good hematologic response and spleen size reduction response, I pray we can find the correct dosage of Rux that works for my mom.
On the note of Rux vs IFN on disease reversion, I am still checking for latest news to see. But seeing several just confirmed past months saying they been on Rux for 2 years and VAF reduced by 2x is really hopeful news
thank you Lizzziep! I saw your posts too and wish you very well! You didnt mentioned which markers were there for bag prognosis but please keep up positive attitude, My mom has been doing that and I am truly thankful she has been so positive all the time and she did exercise a lot everyday
While I do not have an identical diagnosis (Dx), as your mum, there are some things I am aware of being (now 64yo), I was Dx as Post ET / MF, CALR+ Type2, ASXL1+ & Von Willebrands Syndrome (VWS), 2016. Initially, my BMB was also Grade2.
Because your mum is Post PV /MF of course there are some major differences between our Dx conditions...
However, you also mentioned quite a few other things (side-effects), that I am also familiar w/ & especially so when I was on HU. Internal bleeding of the Portal Vein, Bleeding gums, nose, and skin on occasion... HU can be a very harsh drug, for some people, (whereas for others it can apparently work quite well)?
Did NOT work well w/ me... Mind Fog, was terrible, and I almost always felt really ill, as I recall...
My Spleen was slightly enlarged. However, it instantly returned to normal when I started Ruxolitinib, (current dose 20mg bd). It also removed my pruritus itchiness, my head cleared, and I was able to deal much better with all my bone pain issues too...
I can & still do have bone pain, but its much milder most of the time today, my night sweats are far less frequent, although my Platelets are very hard to maintain at lower levels, (mine are ALWAYS Higher!).
In Post PV / MF however, your Mum's Platelets, are most likely to fall into the lower realms, when taking Ruxolitinib.
Rux' is an "Immunosuppressant" so it will cause anaemia, as it does in me. It also means that while taking, (IF our immune systems become greatly reduced), we can become highly vulnerable to many types of other infections. Hence, her Blood Tests will need to be constantly monitored to gauge those changing trends over time...
In MPNs Steve, the "DRIVER" mutations are usually defined as responsible for our MPNs generally-speaking, one of Three (3):
* JAK2
* MPL
* CALR. Type 1 or 2
Those other mutations you've mentioned above, revealed by the NGS Panel Tests, are what are known as High Risk Mutations (HRM).
As mentioned above, I have ASXL1+ VAF20%, and they tell me that it usually indicates a poorer prognosis. However, I am still here, and most of the time I feel reasonably well...
I look after myself w/ an anti-inflammatory diet, (mostly Plant-based), endeavour to always avoid processed foods.
* NO alcohol
* NO added sugar
* NO soft drinks
* I am Vegetarian anyways so No meat (although I do have some fish once a week)
I started a fitness regime of cycling long distances, & today I am cycling between 200-300km pw. I was also Higher Blood Pressure at Dx, but as my fitness improved I was able to stop taking those pills...
Naturally produced 'Raw Beetroot Juice' is high in Nitrate, which makes it a natural vasodilator, Really works well for me. Keeps my BP down, while simultaneously providing me extended endurance levels.
Steve, I am NOT sure what eastern supplements might work well for your mum (?) It's all a bit tricky really... I do take supplements myself, and they seem to help. One in particular you might Test your Mum's Bloods for is Vitamin D.
D levels always seem to be deficient in cancer patients.
My 'D' supplement corrects that problem for me.
Hopefully, something I've shared here might be of some use Steve. Keep researching, and keep asking questions...
Like Ainslie mentioned, we are all just patients here, and all advice MUST also be checked by your MPN Medical Team.
I understand that it might be a tad tougher in Vietnam. However, perhaps trying to talk via a Tele-Consult with an MPN Specialist like Prof. Claire Harrison might be a good place to start too...
Allogenic Stem Cell Transplants (ASCT), are tricky things too... My siblings were not a Full 10/10 Tissue Type (TT) for me either. Fortunately, in my case, today I am reasonably stable due to the Ruxolitinib...
Hopefully, this might also become true for your Mum...
Thank you for such detailed answer Steve. I did follow your posts along so what you have been saying, I am familiar with to some extent.
You mentioned your dose is 20mg bd, as in 20mg x 2 times a day = 40mg / daily? My mom has just tested and ultrasounded this morning and results are good except for the PLT that reduced to 9.8k from 188k before she started Rux, just like you said. I know we have several Eastern supplements that can bring PLT up but first doctor via phone advised her to reduce dose to 5mg x 2 times daily. Her spleen size reduced from 17 x 21 cm (doc said cant put correct number cuz it was too large, they call it 4th degree) to 11.7 cm x 13 cm today (doc call it 1st degree). Her HCT is now 38, down from 49 like before and HGB is still 11.7. RBC and WBC is above 3.2 k so still good. So basically, I think, my mom is considered to be responding well the Rux (both hematologically and spleen reduction) and her response time is also quite fast, considering this is in the mid of 3rd week on her drug use. Am I right?
I forgot how long have you been using Rux, but have you ever tested to see if the allele vaf has changed / reduced and/or the MF has still stayed at 2nd grade or reduced to 1st grade? I know that your MF post ET and my mom 's MF post PV are different but still good to know for reference, hence I ask.
Thank you for the advice on the food, yes, lately I told my mom to eat less and/or avoid inflammatory foods too, more consumptions of fish and less chicken and beef. It is rather coincidental that the other week my FB showed a clip of a 95 yo body builder still going strong and he said he avoided inflammatory foods and I also did read about the mechanism of that for the body and what to avoid. Seems that God is pointing me to the right direction already on that
Yes, I agree about the HRM. The model sometimes helps but I find it often times causes more worry than needed and I am a very risk-averse person ever since I had my daughter. I did look up ASXL1 and other mutations as well and it will be dangerous if something wrong happens to our body but like you said, regular exercise and good diet to prevent the bad things then those HRM mutations wont have chance to act, not even mentioning that we dont even know exactly to what extent, how much VAF of such HRM mutations is equivalent to how much deadly possibilities to us. As much as I want to know exact to prevent, as much as I want to hear more from people with MPNs here who outlast their prognosis. And because you and my mother are not PMF, but MF post ET and post PV, that also make a lot of difference in how these HRM mutations dictate in the body. Like MF post PV has about 4% of progression to AML, and thats much less to the chance of progression to AML for PMF.
As I mentioned before, I read about the case of MichaelS, he said he been using Rux 10mg twice a day since early 2014 due to PV changing to MF in 2009/2010. He also that he would be 77 soon and he was diag with PV since 1983. The case of Michael really gives hope to me, for my mom. My post was so that I could hear more from those people with similar great results and I am glad you chimed in.
My mom has been exercising for at least 45 minutes a day with her Tai Chi exercises and jogs for about 3km everyday .I do not know how many people here do practice/train their "Chi" but in Eastern medicine, it is very meaningful if you pay attention and strengthen your "Chi" everyday. I would want to share this in case someone who is familiar with and is already doing it can chime in and let me know how it is helping. You could probably see cases from Indian Got Talent or how Asian soldiers train in the old ways, and that they can use their throat to push against a spear that pushes the 2 ton truck for a 100m distance or more. I did study some of the materials, though I did not practice up to that extent (which can take as many as 10-20 years to master) but Eastern Traditional medicine believes each cell in our body does emit energy. If a person is fit and healthy, he has good "Chi", showing by vibrant healthy skin, hair and look. Weak people looks pale due to the lack of good "Chi" or the "Chi" does not show much. And I do see a connection to the Western way, that we are what we eat. So with that said, my mom has much better appetite ever since on Rux, no dry mouth as with HU so she is eating well and I hope it helps too. She does not consume alcohol or any "toxic" stuffs and loads of fruit and veggies with enough protein and rice, which I see in accordance to your diet (though you are vegen now). Broccoli has loads of Vitamin K, which helps to produce PLT in the body, so I am advising my mom to eat more of that to boost up her PLT in addition to reducing Rux.
However, as with your experience, does 20mg x twice daily reduces to 5mg x twice daily with such results seem to be quite a big jump? I know some doctor like to go little and up, and some like to go big then reduce but to what extent does this allows to for the Rux?
Thank you for the tip on Vit D. My mom has good bone density for her age, thanks God, and I will advise her to consume Vit D supplement soon. She is currently taking some B - complex supplement.
I heard about Prof. Harrison, she does Tele- consult too? I am not sure for the moment if its too soon to ask for her help, partly, in Vietnam the next best thing to HU is only Rux. IFN is not an option. My mom has tolerated the HU quite well until lately her back hurts more than before and then Rux came just in time. Might I know for how long have you been on Rux? The other day, someone asked about the withdrawal rate on Rux in the trial and 5 year follow up after trial, and I did look that up, along with this study by Prof. Harrison,
it does worry me quite a lot. I understand that each person is totally different and the numbers of people in the study do not represent for the entire population of MPN people but such study is still quite pessimistic to read for me. It seems that there is too much luck dependence and that we do not know until it happens, that sort of thing passed my mind when I was reading studies like this.
However, with my mom's response to the drug in such time, I think that is 1/3 of the way. Other 1/3 will be finding the right dose to balance everything out in control, and the last 1/3 will be hope that my mom can respond to Rux for as long as Michael S has been through or at least until another better drug is approved to use here in Vietnam
Thank you so much for lots of information shared Steve,
Best wishes to you too and I do have cousin living in Brisbane, and if things sort out well for my mom this year, next year we shall visit her. If then, by the time, I would let you know, maybe we can meet and have some chats. I always love to meet people around the world!
Sounds like your mum is responding well thus far... It's always very difficult to know precisely what a "Right dosage" might be from one person to the next, as we are all quite a uniquely composed chemical composition within each individual...
I have now been on Rux' for just over Six (6) years. Bit of a rollercoaster at times... But so much better than anything else I'd tried, that is certain!
Not sure how difficult or otherwise it might be to arrange a Tele-Consult' with someone like Prof. Harrison. However, perhaps ask Maz, (MPN Voice Admin), if she can assist you in any way?
Being in Vietnam, obviously complicates issues of course... At least your Mum is able to access Ruxolitinib! Hopefully, that will remain, Best Available Therapy (BAT).
There is a great deal of literature out there about Ruxoltinib. However, I am aware of some of the downsides too. For example, some of the literature states that Rux' over time can harm the renal system. Hence, why keeping our systems flushed and as sturdy as is possible is really very important, in my view... Diet & exercise are of vital importance!
Rachel mentioned possible skin problems too... Again, this happens with some people more, and not so much with others... (?) Sounds like Mum is also good at taking care of her Chi!
HRMs, are called that for a reason... However, so far... so good for me...
There is also what is known as RWS, (Ruxolitinib Withdrawal Syndrome). To alter the Dosage of Rux' should be done in consultation w/ your Mum's medical Team. My Dosage adjustments were always done slowly, in order to allow my body TIME to adjust to the changes gradually...
And of course, if you ever visit in Australia, please do try to catch up for a Cafe somewheres... But I am in Sydney, quite a distance from Brisbane too...
Thank you for the tip Steve! I will try with the doctor here first to see. He seems to know the stuffs when we called in today and asked us to send the lab report over to check for certainty and advised my mom to reduce to 5mg twice a day immediately. He did note that now will adjust the drug in accordance with the PLT and not RBC or HBG. If anything might seem to be out of hand I will definitely reach out to Maz for help, which I hope I wont need to.
Thanks for mentioning the impact on renal system, I did not come across that during my research. My mom however, in addition to Ultrasound her spleen also Ultrasound her Kidney and for the first time ever, doc said that the renal cortex is a tad unclear to see. It must be due to the Rux. Hopefully this dosage reduction shall help to correct that
Yes I did read about the Rux withdrawal symptoms and I did not want to mention that 😂 It is so disappointing and frustrating when I read about that. It is like one of the best cure at the time (before Fedratinib and Besremi and the up coming Momelotinib) did not work and you had to drop it and then whats left afterwards? I find it so sad that there has not been much progress in MPN first line therapy available, not mentioning the cure.
However, I did read the case of a couple in South Africa in this forum that the husband was gone for 4 weeks without Rux during work/vacation then he came back and took Rux again without any changes in his blood test. So again, it is individual dependent, and as I call it, luck dependent.
Yes I do see that Brisbane and Sydney arent close, but if it is the first visit, I am sure we will be taken there for sightseeIng. If the trip shall take place next year, hopefully, I will let you know
In the meantime, I am truly grateful that you and others have chimed in with me on this. It is always great to learn from other patients, lots of good helpful resources!
Dear Steve, I can share my experience of ruxolitinib. It’s a good idea not to mix it with any herbal preps as some of them change absorption rates and there is little research on this area. The side effect I wasn’t warned about was the higher risk of sarcomatoid sccs- an agressive skin cancer. The skin cancers have caused me more distress than the MF. My main symptoms from the MPN are anaemia and fatigue. It may be that Fedratinib or Momelotinib might help with the anemia, but as you’ve said sample sizes are small At present I’m having blood transfusions now and then to improve my quality of life
Thank you Rachel! Yes, we still have not taken any supplements until things balance out first. It is quite pity that the West and East medication have rather different directions and not working along up well yet. Thank you for prompt about the skin cancer. I did read about it for some people here on Rux and I did advise my mom to always use sunscreen cream before going out of the house and wear hat and/or umbrella when it is sunny to minimize that too.
I did read about your case, so my deep condolences to your utmost loss. I am sure on the other side of the world, your beloved husband is still watching and giving you strength to cope with your PMF. I hope that Momelotinib shall be approved soon on this due date in September so many MPN people and you can have access to it. Being owned by GSK, hoe that it can also means speedy approval in UK
This is just a general point, I don’t think that just because we have certain mutations that bad things are going to happen. MPN voice has a good video on mutations on the website, it’s possibly a bit technical in the first half or so but the talk by the blonde hair lady (sorry can’t remember her name) in second half talks about that. I think keep realistic but positive.
Yes Ainslie, I do recall from my Genetic diseases class that if you got that bad gene, it does not always mean that you will have the disease. Could you provide me the link? I would like to watch and learn too. I do not mind technical stuffs as I am also into learning deep about subjects that I care until I thoroughly understand everything. Should not be an issue for me I still remember quite a lot from my classes in University back then, especially when it comes to medical subject
if you google MPN voice videos its about the 4th video down, they are all on youtube, I listened mainly to Anne Godfrey which is about an hour in to it.
thank you I will look it up tmr. Reading studies after studies for the past 2-3 weeks been giving me some headaches but I am glad I came this far in understanding these. The community here is so supportive and I learnt a lot already!
and its the Government Health Service here so we are not able to contact the lab , I will ask the Government haem involved but wanted to educate myself in advance of the discussion, its different her to the US, its quite hard to get anything slightly unusual or different to their normal practices
Thank you a bunch! I truly appreciate youe support. To be honest, if this Rux dosage adjustment goes well, I hope to see it treat my mom for long until maybe 80 if possible, then I don’t think she would need to go through such rigorous and draining process as SCT, not mentioning the odds against is quite high
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Low saturation with PV and Jakavi 20
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Starting Rux Next Month
Full blown PV now
