Hi all
Just wondering if others with mpns have had the flu jab? I have ET jak2 + and it was recommended by my gp I have the flu jab. I have a few other health issues as well as ET.
I believe it should be ok because it's not a live vaccine ? But I did think it was a bit late in the day to have the vac because it's nearly March - is it worth it 🤔 just wondering what other on here think??
Hope all are well.
I am only on aspirin for my ET but have had no issues with Flu jabs. My haemotogist also recommended l have the new shingles jab and l had a yellow fever after getting the ok from a specialist last year for a trip - have experienced no problems.
Thank you for your reply I too am only on aspirin at the moment for ET .
If you don't mind me asking have you been told you will go onto other meds at some point? I've been told l will go on hydroxyurea when im 60 or if platelets go too high whichever comes first.
Yes the same at 60 seems to be the magic age
Oh, I didn’t know that! I wish I could have waited till 60. Unfortunately, I had to start the meds at 52 at time of diagnosis. I had just had my third light TIA at 823. If I had had aspirin before that, I would have probably been safe. Cheers. Anag
That depends on which protocol the doc is following. Some say 60 = high risk - others say 65. Prior to the age criteria being met, most docs do not initiate chemotherapy at platelet levels below 1 million unless the patient is symptomatic (DVTs, TIAs, etc.) Like most of our choices for treating MPNs we have to look at our individual risk/benefit profile for each choice we make. The decision to initiate chemotherapy and which medication to use is yours, not the doctor's. The doc makes recommendations - you make decisions.
I love your last comment.....it IS your decision what meds you take. My husband was diagnosed with ET & promptly put on Hydroxea. He was 70yrs. Platelet count came down from 650 to late 300. After 18 months, he decided to ask a naturopath doctor what they thought of his blood results, every 3 months. Because they understood blood tests, that doctor prescribed my husband various natural supplements to take to correct the balance of things going on in his body. So after a short time, he decided to stop the chemo pills to see what his body was actually doing. After 2 years, his platelet count has only risen to 470 & he continues to take good supplements like Vit C, Garlic, Curcumin etc. His haematologist was very surprised when he knew, but not angry. He did say there was a risk of blood clots, but when we pointed out that my husband was already on a blood thinner for high blood pressure, he agreed that would help, so go with your gut feeling about what medications to take. Doctors seem to treat the symptoms rather than the whole body/person.
You are dead tight that it IS our decision about what meds to take. Not only do we each react differently to medications and supplements, but we each have our own preferences about what risks we are willing to take. These are rarely black and white decisions where there is a clear "right" answer. We just have to make the best judgment we can and accept the consequence good and bad. I learned the hard way to pay attention to my instincts in making decisions. I use my head to make the decisions, but never without listening to my gut.
Glad to hear your husband found a complimentary health approach that is working for him. I also use a Turmeric-Curcumin blend to deal with inflammation. It works better than any NSAID I have ever taken. I am consulting with an Integrative Medicine physician now to help figure out what complimentary health approaches might work for me and how they interact with traditional Western medicines.
BTW - if your husband is open to such things, I have found the practice of Qigong to be quite helpful. You need to have a knowledgeable teacher (Sifu), but if you can find one it really does help.
All the best to both you and your husband.
Hi Hunter, I always find your posts to be very measured and thought through as you have a mindful apporoach to your health so I would appreciate your opinion.
Previously I had be warned off taking tumeric-curcumin blend due to it further thinning the blood (I'm only taking aspirin presently). However, having taken it for 10+ years prior to diagnosis in 2018, I miss the additional antiinflammatory benefits.
How did you select the dodge you take?
Regards Órla
I have taken Turmeric-Curcumin together with aspirin. The docs did not have a problem with that. Like most anti-inflammatory meds, there is some potential for potentiation of the blood thinning quality of aspirin. I did not find much difference with the Turmeric blend. I did have to avoid using Fish Oil however as the combined effect would have been too much.
I use a Turmeric-Curcumin supplement that contains a bioavailable form called CurcuWin. The Integrative Medicine doc I see recommends this form of curcumin. Actually found it by chance prior to talking to this doc.
You are wise to check out interactions between all supplements and medications. If something is biologically active enough to help you, then it can also hurt you. That is one of the reasons I go to an Integrative Medicine doc as she has expertise regarding these interactions.
Hope that helps
Hi Hunter I had an apt with my heomotologist today and he said it's ok to have the flu jab but agreed it's a bit late now for this year so I'll probably wait till next year now.
With regards starting hydroxyurea As you know Hunter I've been having a few health problems recently including an ectopic heart beat, high systolic BP( 170) and the optician identified tortuous blood vessels at the back of the eyes which can be an indication of hypertension.?? I discussed all of the above with the heomotologist including the GP starting me on Bisopralol 1.5mg the side effects I was getting e.g low pulse rate, dizziness and nausea, and he said in light of the increased risks it may be time to consider starting the hydroxy😵 but Im not sure if this was more to reduce my stress and anxiety about the increased risk of clots etc or because he is concerned about the potential increased risk.
Obviously I was apprehensive about starting hydroxy but I'm equally scared about the risk of a DVT, TIA etc. The conclusion was to wait to see what the outcome of the echocardiogram is on the 10th March and obviously if it concludes there is a problem with my heart then start hydroxy .
Trouble is my anxiety levels are through the roof now as I'm thinking should I have started the meds? Am I just putting myself at more risk of clots etc because I'm scared of starting hydroxyurea What if what if, what if??
But on the other hand I have been under a lot of stress/ anxiety for some time and this could be the cause of the ectopic heartbeat s?
Also I've been recording my bp for review with the doctor and the systolic BP hasn't been that high on average it's been between 130-140 and over the last week it's more125?? So I'm thinking have I got white coat syndrome or was the GP s machine faulty? .... But then again the optician did identified tortuous blood vessels but she also didn't seem that concerned and just Said mention it to the GP ?????
Sorry for the long post but I guess Im just seeking some reassurance to stop me overthinking this and getting myself in a tiswoz😱😱😱
The heomotologist is going to see me again on the 28th April after I've had the echocardiogram and the decision moving forward will be made however I've already decided if the echocardiogram on the 10 th March does identify a problem I'll contact the heomotologist and ask to see him sooner with a view to starting the meds.
Thanks for taking the time to read this pretty long post any reasurance will be welcomed.
No worries about the long post. You have lots to post about. You should see some of mine where I discuss the brain tumor, atrial tachycardia, good surgery, bad surgery, bone tumor, and ET that progressed to PV.
Let's start with the first part of the Serenity Prayer.
God grant me the Serenity to accept what I cannot change; Courage to change what I can; and Wisdom to know the difference.
Regarding the hydroxyurea - I would think that cytoreduction would be something to consider given your risk factors. While I am not a fan of hydroxyurea personally as I am HU-intolerant, other people tolerate it with little or no problems. There are also other options to consider for chemotherapy/cytoreduction. You are correct in thinking that there are risks to consider with ANY of the medications used to treat ET. There are also risks to undertreating ET. You have to consider your age, your platelet levels, and your cooccurring medical conditions in making a decision. You would also want to know what your JAK2 mutant allele burden is as well as what your von Willebrand Factors & ptt/aptt/INR look like. Educating yourself is the best way to empower yourself. Feeling more empowered will help you reduce your anxiety by reducing that sense you have no control. You can make choices that will enable you to deal more effectively with this host of issues you are facing.
Regarding "white coat syndrome" - LOL!!! I suffer the same thing! The issue is somewhat stress related, but also an artifact of how the BP is measured. The nurse usually rushes you through he process of gathering your vitals, which is not a valid measure. The proper way to get a resting BP is to sit comfortably for 5 minutes, feet flat on the floor, arm bent and supported at the level of your heart. Manual sphygmometers are more accurate and more gentle, so they tend to get lower reads. Electronic devices give the most accurate read if you run them three times in a row in about 5 minutes and take the average. The nurse at my PCP office will take my BP, then sometimes leave the office and tell me to take it myself. It always goes down. I tell her it is because she is so scary. (She is really delightful and a good sport). I also have my own sphygnometer at home and track my BP in true resting status. I chart it and take it to my doc so he can get a more accurate picture of my BP status.
Stress is a VERY bad thing. As Frank Herbert said "Fear is the mind killer." Anxiety has a very negative impact on the body. There is also a feedback loop in which inflammation/pain can cause anxiety and anxiety can cause inflammation/pain. Managing anxiety/stress is vital to your overall healthcare. I think we all find our own ways to manage things. Here is what works for me.
1. Support from my family, friends, and faith community.
2. This forum (my friends and MPN Family).
3. Maintain your sense of humor and find ways to have fun no matter what.
4. Mindfulness practices - I practice Qigong.
5. Say the Serenity Prayer every day and take it to heart!
6. Educate yourself about your condition(s).
7. Create a high-quality treatment team who you trust.
8. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the MPN.
So back to your question about starting HU - educate yourself but do not spin yourself in circles of fear. Either it will help you with no or tolerable side effects, or you will discover it is not going to work for you and you will discontinue it and try something else. When you stop HU, the side effects usually go away. If you decide to use HU, just seek out the information on how to manage being on it as there are things to know and precautions to take. Be assured that many people manage HU with little or no problems. Those of us who do have problems just stop using it and choose something else.
LOL again! I think my answer is longer than your questions. It really does sound like you have a good plan in place. Follow your plan, gather the information you need, and make the best choices you can. Do be assured that you have this.
Thank you for your very informative reply Hunter I feel more reassured that I made the right choice in hanging fire on starting hydroxy until I'm sure that there is actually an underlining problem with my heart or BP etc etc as it could all well be linked to stress and anxiety and if that were the case I would have been taking hydroxyurea for 16 months longer than I have to. I'm not sure about finding out about my allele levels etc as my understanding is there's nothing you can do to change the levels therefore I think I'm someone who is better off not knowing as if it's bad i will just worry more. What I really need is positive attitude, wish you could buy one of them.
I do luv the serenity prayer and I will be saying it daily 🙏
Glad to hear you love the Serenity Prayer. Saying the whole thing is very helpful. The belief and the philosophy are very important for all of us.
God grant me the
Serenity to accept the things I cannot change
Courage to change the things I can, and
Wisdom to know the difference
Enjoying one moment at a time
Living life one day at a time
Accepting hardship as the pathway to peace
Living as He did
Accepting this sinful world as it is and not as I would have it
Knowing that if I surrender to His will
I will be reasonable happy in this lifetime
and Supremely happy in the next
Amen.
Knowing your levels of the JAK2 mutant allele burden is important. Please do not be afraid of this knowledge. Anything less than 50% is indicative of a more favorable prognosis regarding symptom burden and prognosis. If your diagnosis is ET, then you are likely well below this level. Typically people with ET have the lowest levels, those with Myelofibrosis the highest, and people with PV (like me) somewhere in the middle. My JAK2 mutant allele burden is 25%. I find this both informative and reassuring. It is part of how I make decisions about my treatment.
It is actually not true that there is nothing you can do about the level of the mutant allele burden. The PEGylated interferons can reduce the mutant allele burden, sometimes resulting in molecular remission. Some docs prefer Pegasys and Ropeg for this reason. Some docs prefer the interferons over HU for other reasons as well. Whether this is the best choice for you is a another question - one only you can answer.
While you cannot buy a more positive attitude, you can certainly develop one. I believe we each have to find our own path to this, but it always hinges on taking charge of managing our own lives and health. The key really does lie in the Serenity Prayer. Accepting what we cannot change - changing what we can - knowing the difference - and accepting that hardship can be the pathway to peace.
You can do this. You can succeed at managing what is before you. Life in this world is not perfect ant there are always challenges. Sometimes there are more challenges than we think we can bear. That is when we rely on the resources we have been given to overcome the challenges. None of us are alone with all of this unless we choose to be. Heaven knows, I would not be dealing with all of what I have had on my plate on my own. I will leave you with one of my favorite pieces of music - something I find lifts me up when my sprits need a boost.
youtube.com/watch?v=13_nXuJ...
This is a great reply Hunter. You inspire us all.
Hi Camelian, yes many people with MPNs do have the flu jab, if you are concerned about the timing it would be best to discuss this with your GP. Best wishes, Maz
I was hesitant to get the flu shot and didn't last year; this year my doctor recommended it since the strain out there is so strong, saying I had nothing to worry about. So I did and it was entirely a non-event -- no reaction at all. And, best of all, I've not gotten sick.
From what I read on the forum, you may get different answers than this, so it's always good to check with you doctor and see what they say.
best to you
Kim
My husband is post PV MF he get the flu jab every year I also get it too. Our two adult kids are entitled to it because of my husbands blood cancer.
Tracey
I get the flu jab every year. Although as my mpn isnt an illness on the eligibility criteria list at my gp's I have to pay for it.
Denise
Hi. I usually have it, but had so many visits to doctor's surfergy before diagnosis that I couldn't be bothered to make another appt. I was wondering if I should still have one. Best wishes all.
I get my flu jab every year and no problem at all. Both my GP and my haematologist said it's ok.
I too have the flu jab every year. No problems. ET Jak 2.
Hi Camelian,
I will answer you a bit differently than the others above. And... I’m not against vaccines. I just try to intelligently choose which ones are really necessary for me.
It is indeed a bit late, since you would first have enough protection against the flu in a few weeks if you got the jab now. Apparently, the high point of the infections here in Austria was last week, according to government reports. Perhaps in England the rates are different. You can check on that I’m sure.
Nevertheless, I’m very sceptical regarding the effectiveness of flu vaccines in general. It takes over a year to develop them and by that time, that particular flu has already mutated. I also know enough people who got the flu, despite being diligent about getting the yearly flu vaccines. ie: My father got it twice, although he was vaccinated!
I basically try to keep my immune system and gastrointestinal system healthy and do everything else we are supposed to do, wash hands, etc. The swine flu was the only flu I’ve gotten since 1997.
Cheers, Anag
Hi Camelian, yes I have flu jab & never any problems. I always have 2 paracetamol before the jab & 2, 4 hours later, this was recommended to me by several Dr’s. You are right, it’s not a live vaccine so does not give you flu, at worst only mild symptoms as the body replicates to protect us. I can not stress highly enough to everybody just how important it is to have the jab & also a pneumonia jab as our immune system’s are compromised. Personally I think March is a bit late to get the jab now, as it should be all coming to an end. Good luck 👍
I have been kindly offered the flu jab 2 years running with ET. I have tried this and touchwood, all good. No problems ans very glad to have that extra protection.
Thank to you all for the replies. I've decided I won't have the vac this year because I do think it's a bit late in the day but I will have it next year. I agree anag it's a good idea to try and keep yourself healthy to support a strong immune system.
I ALWAYS get the flu jab! So far I've never had the flu in the years I've had the shot. My immune system is already compromised due to ulcerative colitis, and with ET CALR+ I figure it's a great idea to ward off colds and flu. Staying active also keeps things going well.
Yes I agree keeping active helps us keep well although just finished doing my exercises so it doesn't feel like that just yet but I'll reep the benefits as soon as I calm down🤸
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Had your yearly flu jab yet? 
