I was diagnosed three years ago with ET and started on hydroxycarbamide. The doctor told me very abruptly that I had a blood cancer and would have to take chemotherapy for the rest of my life. She went on to say that I should never eat red meat and that I should not take any breakfast cereal which is fortified with vitamins, etc. She handed me the MPN Voice book and told me to read it when I got home. I was, of course, very taken aback and got no chance to ask any questions. She was a haematologist rather than an MPN specialist. She said I had ET/PV and ordered a phlebotomy the following week.
I have since been told by my MPN specialist that I only have ET and certainly do not need phlebotomies. I have been doing reasonably well on hydroxycarbamide but suffered a one third hair loss, brittle nails, extreme fatigue, constant sore tongue, etc. My blood values are staying very good on the whole. I also take the blood thinner - Xarelto - as I had already had blood clots before disgnosis of ET.
I have stuck with the dietary restrictions for the last three years but I have never seen this advice given on the site here. My question is: Was this advice right? I never did consume much red meat but do miss having it now and then.
I would be very interested to hear your comments on this. Thank you and good wishes.
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Jelbea
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Hi Mostew - Thanks for your response. I do eat a good diet of Mediterranean type but I did keep to what I was told by that first haematologist. I apparently only had ET and should not have had the phlebotomy. The whole appointment when I was told I had ET/PV was weird. The lady haematologist in question never met my eyes - everything was addressed curtly to her computer screen. My daughter was with me and took notes regarding the diet of no red meat and no fortified cereals. There was absolutely no empathy at all - it was cold and clinical. We both left the clinic in tears.
I am so glad to hear from you. I did not think to query the advice at the time but as I have never seen it on this site I began to wonder if it was correct.
Regarding the hydroxy although I have these side effects I can deal with them OK. I am one of these odd people who react badly to very many medications and get all the side effects plus a few more😒😉. The interferon route is probably not for me as I already suffer depression caused by a drug which I take for a different ailment and cannot be changed. Anyhow my bloods have stayed good although I had a recent rise in platelets to the 500s at a time when I had suffered a UTI and had a dreadful response to the antibiotic - ending up 9 days in hospital. My hydroxy was increased slightly because of that and platelets have come down to 300s, so all good at present.
Thank you again and hope you are keeping OK at present.
I was started on hydroxyurea. I had lost most of my hair many years before, so didn't notice any hair loss, but I did notice thin, brittle nails, thin, delicate skin, progressively worsening arthritis in my hips and knees particularly and quite poor appetite. And I was needing phlebotomy every few months. I switched to Pegasys several years ago. Since then, the arthritis is pretty much completely resolved. I haven't needed a phlebotomy in several years: only once, shortly after the change. My blood test results are all normal range now, except for slightly low wbc and lymphocytes. My nails are still thin and delicate but not as bad as they were. My appetite is improved. Overall, I am very pleased with the improvements since switching to Pegasys. The injections aren't bad. The only real problem is that I have to pay for it and it is quite expensive. So, keep in mind that there are alternatives to hydroxyurea and one of them might be better for you. You can discuss with your MPN specialist.
Hello plum27 - Thank you for sharing your history with me. You had a rough time on HU but I am glad you are responding well to Pegasys. As I told Mostew above I am on a medication for a different ailment which causes depression so a change to Pegasys might not be right for me. Anyhow I can deal with the side effects and I am grateful that my bloods are going well on it.
My MPN specialist feels that HU is probably best for me and I agree with that.
No. I'm in NZ. Here, only hydroxyurea is covered for ET/PV. Two applications to cover interferon in recent years were rejected on the basis of insufficient evidence that it is superior for most patients. They don't seem to understand that different patients are different. Some can't tolerate hydroxyurea. Some benefit more from interferon. I don't agree with their decision, but I'm biased. I hope there will be more evidence to present to them some time soon. In the meantime, I have to pay, but it's worth it. I wouldn't go back to hydroxyurea. Maybe if I run out of money, I'll have to get some hepatitis so I can have the interferon for that (just kidding).
I’ve never heard of that. I personally eat red meat and it helps you not to be anaemic. An all round Mediterranean style diet is best and as varied as possible such as salads, nuts seeds, fruit with meat, fish etc. I’d keep well away from people who give such restricted and wrongadvice. I’ve had ET at least 7 years and been on hydroxy all that time. I try and eat well ie Mediterranean. I do have side effects such as weight gain, aches and pains etc but it’s all manageable.
hi Planting - Thanks for your post. I do eat a Med style diet and although HU causes me some side effects it is thought to be the best treatment for me. It is working well. I explained to the others I am on a medication which causes some depression and some other ET treatments can also do this so are probably a no-no for me.
What you were originally told does not make sense. You have either ET or PV or MPN-U. It sounds like it is actually ET. With ET, you do not need to do phlebotomies. There is not need to restrict red meat either, other than general health. If you had PV, then you would want to avoid anything with iron supplementation, but that is not relevant for you. People with PV can still eat red meat but need to be mindful of how much iron they consume.
There is no special MPN diet per se but many of us use some form of anti-inflammatory diet. The Mediterranean Diet has some support in the literature.
The side effects you report of considered common HU adverse effects. It would be reasonable to try another option like Pegasys if you wish to see if your respond better to that choice. That would be an issue to discuss with your MPN Specialist.
Hello again Hunter. It is good to hear from you. Indeed the initial giving of the diagnosis was botched and indeed very coldly given as I was not expecting to hear I had an MPN. There was no hint of caring at all. She did not meet my eyes but said everything to her computer screen. Unfortunately I followed the dietary advice to the letter since and recently realised I had never seen this mentioned on the site here. She did not tell me on the day I was to have a phlebotomy but two days later I got a letter to go the following week for this procedure. When it was being done none of the nurses could tell me why it was necessary.
I have come a long way since then and following your advice I got myself in with one of the world specialists in MPNs - unfortunately soon to retire. She only referred to ET and I asked her on one occasion was my diagnosis ET/PV. She said it never had been and was ET which responding very well to hydroxy.
I do follow a Med type diet and will look forward to some red meat from time to time.
As regards the hydroxy side effects I can handle these satisfactorily. I have to keep a very close eye on my skin as I have had many actinic keratoses treated in the past ten years - one turning to basal cell which has been removed.
As I was telling one of the other responders interferons might not be so good for me as I see one of the side effects can be depression. I take a medication for another ailment which has caused me some depression and unfortunately there is no other one I can take instead. Hydroxy is keeping my bloods good although the fatigue is severe - however at 82 I feel I am not doing too badly. I did three hours weeding in the garden this afternoon which I always enjoy, although being hatted and covered up against the sun makes it a very hot occupation!!!
Once again many thanks for your help and good wishes are going your way
Hello ETket- Yes it was pretty weird as it seems no-one else here has been told this. I just followed the instructions like a good little patient until I realised that I had never seen anything about diet restrictions on this site.
I shall enjoy some roast beef or a little steak on occasions and I shall certainly tuck into a bowl of crunchy nut cornflakes some day soon😁👍.
Hello Jelbea! Chiming in here. I was diagnosed with ET CALR+ a couple of years ago. The haematologist MPN specialist in my local London hospital never mentioned then or since any dietary advice whatsoever.
Hi gilded - The whole appointment was upsetting to say the least. I was told I had ET/PV which I do not have - only ET. I had to attend the following week to have a blood let which I did not need and should not have had. The dietary advice (which I followed) was bizarre according to all those who have replied here. The way the news was given to my daughter and I was quite cruel and I left the clinic in tears and shaking. Even though that was seen by nurses no-one offered help.
I eventually got an MPN specialist who is very good and answers all questions . She is friendly and helpful and the only downside is that she may be retiring soon.
Hello Jelbea, sorry to hear about your upsetting experiences. Are you in the UK? This forum retains a list of MPN specialists. Also, perhaps the specialist you currently consult and who you say is retiring soon could recommend someone .
Thank you for your comments. I too was diagnosed with ET 6 years ago and on hydroxy.
No I have not been told to restrict my diet in any way, I am sure a little red meat and cereals are absolutely fine to enjoy. A mixed healthy diet and exercise where poss I am sure is the most important part of looking after ourselves.😀
Hi. I was diagnosed with ET and Jak2 in2019 and put on HU. I take clopidogrel and Atorvastitin. I was not advised about diet bu I eat very little red meat anyway. I remember reading somewhere that it would help to keep my weight down - trying to lose a few pounds after lockdown! MMy hemo advised me to keep hydrated and drink plenty of water - good advice generally. You seem to be doing well. Good luck
Hi summerdown - Your post says " in reply to Frances 1903" but I think it might be for me. Anyhow I hope you are keeping well. As I have said to Frances that appointment when I received my diagnosis was weird as was the advice given.
I take a Med type diet and do drink lots of water and now have a great MPN specialist. Wishing you well
Hi Frances1903. Thank you for responding. You will see from my other replies that my whole appointment when I was told I had ET was a nightmare.
I really only posted now because I had followed the dietary instructions to the letter but had never seen this on the site here. I do eat a Med type diet and although have to walk with a rollator I try to walk for at least 20 minutes each day. I shall enjoy adding a little meat to my diet, especially a nice home-made casserole on a cold day in winter😊. Thank you again for good wishes
A lovely response, yes enjoy a homemade casserole!I am the same,and enjoy meat occasionally. Its a great shock going onto chemo medication. I too was not clearly told I had a blood cancer and no info that medication will be needed for life.People with MPN s could advise doctors what we need to know.Take care and please let me know how you get along.
I'm a newbie here. Only diagnosed 3 weeks ago with E.T. and now on aspirin and hydroxycarbamide (500mg 5 days a week). Much too soon to expect results. I do feel a bit better in myself although the main symptoms aren't much improved. Jelbea, I was sorry to hear about the way you were dealt with, so uncaring and unprofessional. After my diagnosis from a haematologist at the hospital I was passed to one of the nursing team who spent a long time talking me through information about hydroxycarbamide. I have to confess that I was so overwhelmed by everything that had happened I didn't ask too many questions but came away with a load of information to read. She told me very clearly that I was to avoid certain food - red/rare meats, salami, unpasteurised yogurts, brie, stilton cheeses etc., also alcohol!
The information she handed me was provided by MacMillan Cancer Org. but having reread it today it does not in fact mention avoidance of certain foods although under the section about mouth soreness it does advise you to avoid alcohol.
As said, it's very early days for me so I'm more or less sticking by the advice given to me although on the two days without the Hydroxy I treat myself to a coffee stout and I intend to have the occsasional bit of rare beef once I'm further down the line. 🙂
Hello Hbm1 - I see you were only diagnosed three weeks ago and I am sure it was a shock. I take hydroxy (at present 500 mg daily with 1000 on Sat and Sun). I am also on low dose aspirin three days a week as if I do not take this I get migraines with aura. I am also on a blood thinner - Xarelto - as I did have blood clots before my diagnosis.
You are right in saying you cannot think of questions to ask at the time as your emotions are all over the place trying to take in what you have been told. I am glad you have a nurse to talk to. What you were advised regarding food is right as you could pick up illness from these because of your lower immunity. I do not take alcohol but never really have - just an occasional glass of wine in the past so its not something I would miss.
I do hope you will feel better on your treatment. I do have a sore tongue almost all the time but have got used to it. The treatment can make your mouth dry and I use a mouthwash especially for that - it does not contain alcohol. The hydroxy on the whole has been good for me although I do have side effects. I can cope with these as my blood levels are very good. I do not do well with most drugs so I am pleased I can continue on this as sometimes changing could give even worse side effects.
Wishing you all the best as you start your journey and thank you
Hi Jelbea. I was told by an MPN specialist not to take iron supplements as there is some evidence it could hasten a transformation from ET to PV. But that would be very high concentrations of iron. She didnt seem worried about breakfast cereals or meat. I know the Mediterranean diet is often advised, and not eating much red meat is probably a healthy choice but I think an occasional bit of red meat is totally fine. (I do)
Hi junebuggy - I do agree with what you say and follow a Med type diet. I shall enjoy an occasional helping of roast beef. I never did eat much red meat.
The appointment when I got the diagnosis was so badly handled and indeed the diagnosis was wrong as I just have ET. I also had a phlebotomy which I did not need.
I take vision ace, a multi vitamin for macular degeneration, biotin for hair and nails and magnesium. As long as hemo knows about it I think it’s fine. I’m under an MPN specialist at Guy’s.
Hello Wyebird - I also have wet macular degeneration for the past seven years and get both eyes injected every twelve weeks approximately. I was interested in you taking biotin for your hair and nails. I had been told not to take B vitamins unless told to do so. I do stick fairly well to Med diet and hydroxy is keeping my blood levels pretty good - so all well at present except for very thin hair and splitting nails.
Hi mine is the dry.MD. I take Visionace. It was scientifically proved to possibly help about 18 yrs ago but now proven to help. It’s extremely high in Lutins.
I also have ET and I’ve been on hydroxycarbamide for three months now. My platelets are finally at a normal range (375 k) and I have gotten back my energy and my brain power so I’m not complaining at all. LOL
I have side effects all over the place : brittle nails, sore skin all over, some dark spots appeared on my legs… I’m waiting on a consult with a dermatologist and a gynecologist (yeah… hydroxy and mucosa).
To avoid mouth sores, which I don’t have, I was told to use a mouth wash after taking hydroxy. I use any alcohol free Listerine.
That hematologist was so unprofessional! I’m so sorry you had to go through that!
Eventhough diet/food is extremely important, it’s rarely studied in a medical setting. The only research done is on the Mediterranean diet. Why? Because it’s high in plant-based foods and extremely low on all types of processed foods.
The other very intense side effect I have from Hydroxy is that it did a number on my digestive system. I’m sort of vaguely nauseous all the time without ever being sick. It’s a very faint sensation, but it’s constant. Now, just the smell of certain foods I used to love makes me really nauseous (just looking at red meat is now impossible for me LOL). The weird thing is it’s totally random. One week, I can eat cheese (I love stinky French cheeses) but not the next. Or yesterday, I bought a cucumber and this morning, just looking at it made me nauseous. So I basically eat what I feel like eating while making sure it’s an overall balanced diet so I don’t have nutritional deficiencies. My iron levels were a bit too low two months ago, so I made sure I added iron rich foods and my levels were back to normal two weeks ago.
I love and cook Asian foods : Chinese, Vietnamese, Indian, Thai. I eat a lot of spicy stuff (I just love chilies), the occasional white meat, yogurt, tofu, paneer, fruits, vegetables, legumes, eggs, a bit of bread now and then (I’m not big on cereals), pizzas in the summer because I can cook my dough on my barbecue. I don’t like milk so I don’t drink any. I don’t like sugary foods so I don’t eat cakes or biscuits or stuff like that. I’m still working on drinking lots of water (I’m very rarely thirsty, which is weird LOL). I do drink coffee and tea, very rarely alcohol since I don’t like it. I’ve never totally excluded any foods from my diet. I rarely eat very highly processed foods such as charcuterie (sorry, I don't know the word in English). I just use common sense and follow a few guidelines from Ayurvedic medicine (no very hot or very cold foods and drinks at room temperature + foods that help with inflammation like ginger or turmeric) and Chinese medicine (easily digestible foods and foods that ‘help’ my spleen and my immune system) that work for my body.
Hello IsabelleHo - Thank you for your very detailed letter. I am glad your platelets are down to a very good level. I have trouble with skin as I get the little actinic keratoses on my face and have had to get them frozen for the past ten years. Last year one developed into basal cell cancer so had it successfully removed. I attend a dermatologist all the time so he can keep an eye on new ones developing. It is a bit of a downside to hydroxy. My skin is extremely dry and my nails brittle and splitting but it can all be dealt with😁
I follow a Med type diet and no alcohol - not because I am against it but I only ever took an occasional glass of wine so I don't miss it.
Oddly enough I get that slightly nauseous feeling from to time. It just comes out of the blue and I am never sick - just a feeling which puts me off some things but it is hardly worth mentioning as the hydroxy is keeping me stable.
I noticed you talked about "stinky French cheese". I suppose you know that any cheeses you eat should be pasteurized. There are some things I cannot have because of their blood thinning qualities as I have to take a blood thinner plus aspirin. And of course as you say drinking a lot of water is very important.
That said I don’t eat meat (haven’t done most of my life & way before diagnosis).
I have to say I usually feel pretty rubbish after eating useless foods with saturated fat like doughnuts or pies so don’t have stuff like that too often.
We all know we’re supposed to avoid too much sugar & saturated fat but it’s still our choice if we decide to have a cake or pie now & then.
I often look at the anti inflammatory food guide which is pretty good as it says what foodstuffs are inflammatory & offers anti inflammatory alternatives.
I always feel generally much better when I choose my food sensibly &, of course, that’s likely the same for those without an MPN.
Hello Threelions - I hope your ET is stable at present as is mine. My post was really about the strange advice given to me at the time of my diagnosis and the way in which I was treated. I had never seen on this site that anyone had been told not to eat red meat and fortified breakfast cereals and it seems as if no-one else had.
I follow a Med type diet and drink plenty and seem to be going on OK at present. Thank you for your reply and good wishes
I think a lot of this boils down to context and being provided with appropriate information. I think the first haematologist gave out misleading or perhaps sweeping advice without tailoring it to your circumstances and explaining the reasons.
Although I have PV I've been taking hydroxycarbamide for nearly 4 years, mostly 1gm daily. Mouth ulcers and similar often get mentioned but I know that in the UK it can be supplied in 2 forms, either tablets or capsules. I've always had capsules and never had such problems so if you're taking the tablet version it might be worth trying to be prescribed the capsule version. The information leaflet states that if having problems swallowing capsules you can break them open and sprinkle on food which then might exacerbate mouth problems. Everyone appears to have some side effects from the hydroxycarbamide but this varies from person to person and sometimes difficult to pin down especially if taking other meds.
I was told not to take anything with iron supplements as this can cause an increase in red blood cells which is not good news for PV people. Maybe the first haemo was thinking of this given your strange initial diagnosis. As for breakfast cereals, quite a few are fortified with iron but you can get ones without this addition but this may not be an issue for you anyway. Red meat contains a more available form of iron than vegetables so the haemo might have been thinking of this. They should though have explained things to you rather than just dish out sweeping statements. I've never been advised to avoid specific foods (apart from red meat) or vitamins (except iron) but have of course been advised to have a balanced, Mediterranean diet. I also think as others have said that an occasional little bit of what you fancy will not do any harm and I do have red meat just once in a while. Being well hydrated because of the PV is a given but then that creates other issues... As always, best to discuss all of this in detail with your MPN specialist.
Finally, do you keep track of your blood count/test data? It's a good idea to do so and ask for this information rather than wait to be offered it. You might be able to access this online depending on who does it and whether they offer online access. This appears to be very variable across the country. You might even wish to consider registering for the research study using the new MyMPNVoice App recently launched in the UK. This provides an easy way of recording blood count data along with daily symptoms and experiences. There is info on this in the News section at mpnvoice.org.uk
Hi finlay2106 - Thank you so much for your advice. I see you have PV and treated with hydroxycarbamide. I note what you say about the tablets and capsules. I used to be on capsules but then I developed a difficulty in swallowing (separate to ET) and my MPN specialist who is very good prescribed a liquid version of hydroxy called Xromi which I take with a little syringe. I have not had any problem with mouth ulcers - only a sore tongue which I think is caused by a very dry mouth. Two other medicines I take both cause dryness in the mouth and it is possible I might have Sjogrens. I combat the dryness with special mouthwash. Also chewing gum sweetened with xylitol is very good.
I follow a Med type diet and do not like alcohol so that is not a problem.
Really it was the callous way in which the diagnosis was given. Firstly it was wrong as I was told I had ET/PV and I only have ET. Then I was given a phlebotomy which should never have happened as there was no need and thirdly the wrong advice about red meat and fortified cereals which no-one else here had heard of.
Thank you for all your very valuable advice and I hope all is well with you
It's funny. I had asked my specialist about this as I eat some red meat and also consume (historically) plenty of cereal. Both of those are high in iron. Some cereals in particular are extremely high in iron, such as Kix, where one serving has about 60% of your entirely daily recommended allocation.
Iron contributes towards the HCT and red blood cell issues. This has been treated typically via phlebotomies. Phlebotomies take blood out, which removes iron from your system and keeps iron levels low, intentionally. That is supposed to help mitigate the excess production of the red blood cells.
By consuming a lot of iron, you may be competing against some of the benefit from the phlebotomies. Having said that, meat doesn't have that much. One serving of beef has 2.2 mg of iron. By comparison, one serving of Kix has 11 mg. So beef is only about 12% of a daily serving of iron. Some cereals are also not fortified with iron. Whole foods brand actually typically doesn't fortify. You just need to look at the label to see how much iron is in the cereal and avoid those that are fortified.
Having said that, some of the drugs that some of us are on, can also help to improve disease progression and that can also provide more flexibility for iron consumption concerns as well. It should go without saying that I'm not a doctor, but this is all my understanding and how I also approach my own situation.
Hi Lutheroville - Thank you for your reply. I understand all you are saying. I was told at the start that I had ET/PV. Actually this was wrong and I just have ET. I do not therefore have to have phlebotomies.
I was given the wrong advice at the start which should only have been "no iron supplements". The breakfast cereal and red meat advice was not correct. In fact the whole first appointment when I was diagnosed was a nightmare.
However, I am now stable on hydroxy, aspirin and a blood thinner and can allow myself to have the things I have been avoiding for the last three years. Of course I would not go overboard with this.
I do appreciate your advice and hope you are keeping well at present
I had the SAME experience when I was diagnosed! The Hematologist said "you want me to give it to you straight, you have blood cancer." For the first time in my life, when I left that office I had a panic attack and have been working on my anxiety ever since. If had my current MPN Specialist explained it to me now, my path could have been very different. So reckless. This is why I'm so grateful of this group and its support.
I don't have much advice about the diet, I just do my best to eat healthy and workout as it helps me my fatigue and mental health. Wishing you all the best!
Hello Zeppelin11 - Thank you so much for your post. I am sorry you had a similar experience to mine. You are so much younger than me (82) and it is a shock no matter what age you are. I have always suffered anxiety issues but was made far worse by the way in which I was told.
I see from your profile what you may be going on a trial and I wish you all the best on that. Hydroxy is not a nice drug to be on but at present it is keeping me OK and I am dealing with the downsides.
In general I don't trust doctor's recommendations for diet.
They don't spend much time covering nutrition and it is a complicated field.
I was not advised to change my diet and I've not read anything about changing one's diet for ET specifically. However, having a good diet (and exercising) would be the best non medical approach one can take to help with your overall health. A plant focused diet seems to be consistently rated as one of the best out there.
By a plant focused diet I do not mean vegetarian or vegan, simply that most of your food is plant based. Personally, I do best with at least half to 3/4 of that plant based food being lower starch vegetables and fruit, minimally processed. But there is plenty of conflicting information.
You could try different diets between blood draws and see what works for you, both in blood count and how you feel getting through the day.
Supplements that I have found really helpful are magnesium for muscle cramps and Vit B12, which as we age becomes harder to absorb. I was already proscribed Calcium and vit D3 because I am female of a certain age with some bone loss.
Hi nightshadow - Thank you for all your information. I try to follow a Med type diet and get some exercise each day. I do not have blood draws as I only have ET. The wrong information I was given at diagnosis meant that I was avoiding foodstuffs which I did not need to avoid. I see you mention VitB12 which was one of the things I was told to avoid in the form of fortified breakfast cereals but this was incorrect. I do take magnesium and vitamin D3.
Again many thanks for your response and good wishes
I have PV and was told, initially, to avoid high iron foods too. However, this was because my iron levels were very high, which is unusual for a PV patient, or so I was told at the time. I was advised to not eat cereals fortified with iron too and to limit foods high in iron. I was given an appointment with a dietician who said, she'd never been asked about low iron diets and the information, I was sent was how to increase iron but told to do the opposite 😂 she agreed with the advise to not eat cereals fortified with iron but said, natural sources would have limited impact on my iron levels.
Since starting Peg interferon, my iron levels have improved and my Haematologist has said to eat a healthy/balanced diet, which includes treats. Still to avoid iron fortified foods though. So I can enjoy a cheeky burger now 😋
As you can see, I'm not medical and this is just my personal experience. I am learning so much from others on the forum too.
I hope your journey improves and your tolerance builds to your meds too.
Hello Lyndjs - Thank you very much for your reply. I was definitely given the wrong advice as I was told I had ET/PV and I only have ET so I do not need blood draws. I was told to avoid breakfast cereals which are fortified and red meat and apparently from all the other replies I have received this is not the case for ET.
Thank you for your kind words. I am at present stable on hydroxy and although have side effects I shall put up with these. I am not good with medication as I react badly to many things and always get the side effects. I was in hospital recently and the pharmacist told me that a percentage of people are like me. It is a great drawback but good to know it is now recognised. I was made to feel by doctors in the past that I was just being difficult😁😁.
I do hope you are managing well at present and again thanks and good wishes
So good to hear you're now stable. Hopefully, you'll be able to tolerate your meds/ side effects better over time. This has certainly been the case for me, with peginterferon.
I'm sorry you had such a negative experience with your doctor. I have an amazing haematologist. So lucky, I know.
It's so good you've found this form. The people here are amazing. They have a lived experience of MPNs and are all happy to share and support. I have learned so much and this helps us, with our communication with medical teams too.
Thank you for your lovely reply. Please stay in touch. Enjoy the little things, as they keep us going 🥰
Sorry in advance that I will write a book. If just 1 or 2 things speak to you, try them.
I know what abrupt means. I was diagnosed because I had my 3rd TIA and was met with an avalache of info, spat out at 100mph and the doctor tried to kick me out of his office in 7 minutes flat, while I was numb and all I could think about is that my teenager was about to take her life! I DID NOT BUDGE! I immediately learned my rights as a patient. Cancer patients have laws to protect them. Learn them, educate yourself (which you can do here very well if you take time to read, listen and connect). Bottom line: you must advocate for yourself and dont let others push you around. BRAVO that you went to an MPN specialist. : )
The HU is an awful drug that causes terrible side effects for many, but almost none for others. For them its ok. On the second day, I had symptoms like dicoordination of my limbs, sudden dementia, etc. If youre losing such amounts of hair, brittle nails, etc, its definitely ntaking a toll on your body. There are other medications. Anagrelide or the Interferons Pegasus and Besremi (which I am on now). : ) The last 2 work through the immune system and because of my hashimoto, the doctors said no. Well, finally I have an MPN specialist and she put me on besremi and
I have ET (Type CALR) (diagnosis 2017, I am now 59) and I eat red meat at least once a week from the 100% organic animal which I knew. I also bought all the organ meat that edible and about 25 kg of bones which I turn into 24 hr simmered bone broth every six weeks and store in sterilized jars in my 2nd fridge for up to 2 months. Must add a little white vinegar and some salt for it to keep. that has incedible health benfits. I understand the red meat thing, but not for our type of cancer. Patients with chronic illnesses tend to need more iron.
I have Hashimoto thyroiditis, which is after all my self care now down 60% after 5 years! That is not supposed to happen; doctors are baffled. nevertheless, they don't care to hear what I did. I have an inborn anaemia typical of my mediteranean heritage. Therefore 2 blood problems. Then the other stuff. I HAD:
Eczema (33 years), Depression off and on, all my life, lots off extra weight, fatty liver, chronic sinus infection with enless antibiotics, chronic bronchitis, pneumonia three times, body odor, mouth odor, low pressure glaucoma, bouts of extreme fatigue, gastritis, terrible brain fog, incontinence, distention,....
All of us have other chronic conditions, wether they are already recognized/diagnosed or not. Our bodies need nutrients, nutrients, nutrients, that is why we have those condition or we have those nutrient deficiencies because of our conditions. there are so many factors to consider. Firstly, its important to reduce ALL forms of inflammation. #1 is diet. Getting rid of all chemicals getting into the body through food, all perfumes (detergents, soaps, air fresheners, washing liquid, etc. and the chemicals getting onto your skin (which travel into your blood stream reaching all organs, etc.) My home and body is a chemical free zone. I live next to the woods and in Vienna, Austria, we have fabulous spring water coming out of our tap! Thats where the blessing starts. Clean Water.
I and others on the forum are on an anti inflammatory diet. I'm on the Auto Immune Paleo Diet which I started cold turkey and it changed my entire life for the better within just 6 months! No grains except a bit of rice, no milk products, no sugar, no night shade. Lots of good fats, which I NEVER ate before. Best organic greek olive oil 50liters a year for the family of 3 and grass fed organic butter. our bodies burn fat, not sugar. this is not the ketogenic diet. Potatoes ok if not fired. Boiled or in oven is best. Organic can eat a hole in your pocket. Any
Most of the chronic problems above disappeared in that time. Within 4 years 25kg had left my body although I eat about 700 calories more per day as when I was 18. I have a new lease on life. Fell better and am stronger than with 42. I also do a parasite cleansing with Mimosa Pudica and activated Carbon capsules 2x a year and a five day water fast 2x a year. Since by body bruns fat, I dont feel a single minute of hunger in that time. It just burns my fat. Fat stores chemicals and heavy metals, by the way.
My supplements are of of highest quality only, 100% natural ingredients. They are not cheap but worth it. Vitamin C 750mg, Zink 15mg, I take 50,000IUs a week of VIT D (to stay at a level of 70-80 which is ideal) CoQ10 100mg, Magnesium 250mg, B complex, L-Glutamine 1 level tsp in the morning helps the gut, bone broth (I put it in many foods), intestinal bacteria thats alive (At first for 4 months twice daily, then ever other month daily), Acetyl L-Carnitine 1-2g per day depending on activity, is great for energy and helps the brain, Iron. I eat whole bunches of coriander, which I chew well. This is a safe way to pull out heavy metals out of the body over time.
Bottom line: All meds are hard on the liver and kidneys and on various organs, including skin and intestines. Once the chemical load is reduced, the liver and kidneys have an easier time dealing with the HU and other drugs) the body slowly regains itself, brain fog starts to lift. Perhaps you'll be able to tolerate the HU better.
Because my body was strong, I was able to change to Besremi. At some point, this med caused me problems, which I now have under control.
No overload please. If you would try any of the above, the process takes a long time. I started with diet, and some basic supplements and a year later, started ridding my home and body of chemicals. The adjustments and changes took 2,5 years. It took our bodies a long time to get to where they are. We must help them over time to get better. No quick fixes.
Very important is to have a good natural or functional medical doctor to help us start on a good path and to support us along the way! I would not do this without one!
I wish you all the best!
p.s. Fortified cereals are chemical vitamins. Folic acid is especially not good. It blocks the folate receptors on our cells, whereas folate docks onto those receptors and then goes into the cell to help it work better and keep the body working well-energized and regenerating as the body should be at every level.
Hi Anag - Sorry for the delay in answering as I was unavailable all day yesterday. You have gone into such detail and are certainly very knowledgeable. I am so glad you have turned your life around and are feeling so much better now.
I shall study all you say and see what I might be able to utilize.
Thank you again for taking so much time to give me help and I send all good wishes to you.
You’re welcome. I have been so fortunate to learn so much from amazing doctors and studying. It is my pleasure to help! 🙂 For us MPNers, quality of life is so important. I used to need 2-3 rests a day. Now I have my life back, with almost no restrictions. It is wonderful if others can find this.
I have ET & moved from Hydroxy because of hair loss nails problems & gastric trouble. Peg Interferon solved all those problems. I always have cereals breakfast but usually muesli made myself oats etc . I was told same on red meat so eat chicken fish. Rest is Meditteranean diet low carbs no sugar.
But occasional treat doesn’t harm . I have glass of red wine if dinner with friends.
12 weekly blood checks & nothing major to report. If there was I would adjust diet. I fear too many Drs know nothing of our complaint. Mine did not & I never see him. I rely on Haemotology Drs & a brilliant MPN for advice . & this great web page.👌Julia.
Hello Exeter. Thank you for all the info. I can manage hydroxy even with the side effects as I fear I might have more side effects on PegInterferon. I have read that it is not a good drug if the patient suffers depression. Unfortunately I suffer depression from another medicine which I have to take for another ailment. I do not seem to have much in the line of gastric issues with hydroxy so that is good.
You are right about our GPs. Mine had not heard of ET and could not spell it! He ignores it entirely if I am with him for anything else - does not even ask how I am getting on😒. So it is so good that we have this great site and our wonderful MPN specialists.
I shall treat myself occasionally to a nice beef casserole, especially in the cold winter days. I would eat mostly chicken and fish.
I with you well in your continued journey on pegInterferon and again thanks for reply. Barbara
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