Currently on a high dose of Hydro (3 pills a day) and trying to keep consistent numbers. My platelets spiked up to the millions last month because we have been adjusting my dosage and it backfired. I’m currently in normal range but the high dose is daunting, especially because I’m only 38 years old. My hematologist has suggested interferon but said it’s highly likely that it will cause depression and I can only be on it for two years. Thoughts from anyone taking it? I actually handle the hydro well, I just have days when I’m tired. But I hate putting the toxins in my body. I feel like I take a higher dose than most. Thankful for this community. I feel alone at times because it’s such a rare disease for someone my age. I have a supportive family, but I’m always explaining myself and searching for answers.
Living with ET+CALR and new to the group…Hello E... - MPN Voice
Living with ET+CALR and new to the group…Hello Everyone
hi! I totally understand your concerns. I have been on interferon since last year September and I struggle a lot, especially depression and suicidal thoughts. This is a big side effect for me. My platelets are in ok level however white blood cells are extremely low and the headaches and flu symptoms plus bad thought are never leaving me. I am actually going to have an APPOITMENT with my haematologist soon to see what are my other options.
I am worried they will suggest chemo. Is this what you are on? I am 37 years old and they said interferon treatment was the best for my group age
Wishing you all the best
Iga
I came off interferon as I couldn't cope with the side effects. Back on hu and I have to say mentally in a much better place. Find yourself a specialist other treatments are available and trials going on all the time. Don't suffer it's not right.
Drawbac
please start detoxing your body/liver. We need to get the toxins out of our body. I was a depression mess all my life and since cleaning my body all is gone. I’m so much healthier at 57 than at 42 despite my ET and meds. If you detox, take it on the day before you do your shot as to not cause it to detox. Eating a low inflammation diet, Getting rid of the grains that are GMO and are not organic is huge. And only organic milk products or better get rid of them. Get rid of chemicals in your house is also important. I hope you can do that. Living with depression is debilitating and robs you of life quality. Reducing the toxic load that we all have in our world throws our body and nervous system off balance.
Hoped to have helped. Anag. 🙂
hi Anag, thanks a lot for the advice. How are you detoxing body/liver? Any good ideas?
Iga
the easiest simple liver help is squeeze 5 lemons and put the juice in a very clean little bottle. Every time you have a meal, add some juice to your water. Get liver going.
A stronger detox is:
Liver pack: Castor oil put on the liver area, small towel over it, Plastik on top of that then a hot water bottle on top. Lie quietly for 1/2 hr while resting. This activates the liver to cleanse.
Or you could just make a concentrated sage tea and wet the towel instead of the Castor oil.
Really intensive is a coffee enema down properly. Most people freak out about that one. 🙄
There is also artichoke concentrate, one tbsp before each meal.
Important is, make sure you are pooping daily. If constipated, your body takes up the toxins and recur less than back to the liver. When was the last time any doctor asked how your stool is doing. I haven’t heard that question in 30 years! Except for my natural doctors. 🙂
The liver pack can be done every night the first week and then 1-2 x a week is good. Coffee weekly.
Detox baths are also amazing. They pull out toxins through the skin.
All this will lighten your being. Best of all is not to let toxins get into your body in the first place!
Clean diet. Staying away from wheat is huge!! If milk products, then Only from grass fed organic cows. The conventional dairy production’s cows die at about 5 years instead of 20 and then are not allowed by European law to even be made into dog food!!! They are so sick. They are dangerous waste, but producers sell the dairy till the end.
We have to do something about this. Half the kids by the age of 10 have autoimmune problems, allergies, intolerances. And we’re surprised why? We need to invest in one thing, better food.
🙂 Anag
thank you so much for that Anag, I am not going to lie but my journey to more conscious eating / diet started recently so I am fascinated what human body is capable and natural remedies.
I started grounding and yoga. And for first time in my life started drinking natural teas.
I really hope this will help my blood significantly.
As well I cut out meat from my diet (occasionally will have chicken or turkey) sugars and refined fats.
Now I am trying to reduce milk products because what you have said.
I was trying to do beetroot diet however I struggled with taste of beetroot so much that was gagging
Have a great evening
Iga
CAREFUL WITH BEET ROOT! It raises thrombocytes! Check all foods that do this! Sweet potato, broccoli, dark leafy greens, papaya! KALE!! All food with lots of Vit K. Liver. Check also those that lower them. Pomegranate lowers, but the seeds raise the thrombocytes.
I switched to rice milk from one day to the next. We can get more than enough calcium from foods and better source than that from fortified in milk products. The conventional cow milk has hardly any nutrition. Where would they get it from? The industry is so nasty to animals. In Austria we are thank God leaders in Europe for organic farming! Happy animals, great food. Once we got off the chemical train, our food tastes like in the old days. Then we go even to a “good” restaurant and it doesn’t taste good any more.
The poultry farming is also a Desaster. I developed a turkey and turkey egg/chicken egg intolerance because they were eaten almost every day with wheat and I have a strong gluten intolerance. The gluten put holes in the gut and all the molecules that come into the gutter along with it, pass into the bloodstream, causing an immune reaction. For that reason, I also have an intolerance for mushrooms and chocolate because I always ate cookies with the chocolate coating! Because of this, my daughter developed a honey and zucchini intolerance. Pancakes and honey, pasta and zucchini where her favourite foods!
hi lovely am due to also start inforn on Thursday am also really worried abt the depression and thoughts an 48 xx
Wishing you the best of luck! I was recently told by an MPN Specialist that only 20% of patients deal with depression while on this medication (very low number). Utilize your resources when it comes to your mental health (i.e. therapy, exercise, meditation, music, time with people that bring you joy, etc). Going through this in general is a lot to carry but on the other hand will make you incredibly grateful. You got this!
Hi there,
I am 46yo, I have ET with CALR also. I was diagnosed at 32yo. At that time my platelets were around 700,000. They have crept up over the years and have been around 1,500,000 for the past 5 or 6 years. I have also developed acquired Von Willebrands Disease (excessive bleeding).
Thankfully, I am generally very well and seem to have no symptoms of ET or aVWD. I realise I am lucky. Sometimes I worry about it but I've learned to control my worry and live very well with the condition.
I keep myself very well hydrated, reasonably fit and as healthy as possible but I'm not super fit just moderately with tennis, walks, cycling etc.
I am not on any treatment because I am considered low-risk by means of the IPSET risk assessment score (i.e. I am <60yo, no other cardiovascular risks, I am CALR+ and have no previous thrombosis). Perhaps you could explore this with your haematologist? Perhaps you might be low risk too?
Keep yourself up to date on the facts relating to the condition (this forum is great in that way) and then you can make informed decisions in conjunction with your haematologist.
Best of luck to you.
E
Hi welcome to the group you will get good advice and someone will always be there for you I have P V and on Pegasys and cope very well with it no depression just some down days now and again mainly due to tiredness look after yourself and keep questioning the doctors best wishes Poppy
thank you for your response! I have VW as well. Our stories are very similar. We tried to put me on an aspirin only regiment a few months back and my platelets skyrocketed so they had to put him back on Hydro. Not sure why my platelets are working overtime as I have been told that I am low risk. I try to live a pretty healthy lifestyle as well. Eating well, working out, etc. would love to keep in touch since we are so similar.
thank you so much for your response. Yes, I will defiantly speak with my henatologist on my next APPOITMENT.
Yes I have pretty much everything you do as well and am considered low risk but I'm still on medication. Do you mind if I ask if where your platelets are at right now? You mentioned 1.5 million. Just curious where your Hematologist is conformable with you.
thank you! You’re are doing well. Yes I get the occasional bit of sadness and then I send it away. Unfortunately, I have had six light TIAs. My first at the time that I had 600,000. I was diagnosed with the third and biggest one when I had 820, therefore, I am high risk.
moderate exercise is very good for us, but strong exercise isn’t. It increases oxidative stress in our body and makes her illness worse.
all the best to you! Anag
Interesting, this is the first time I've heard about a lot of exercise not being good for you. will look more into this. Thank you.
I've been on both and responded well to both. But IFN has potential long term benefits that hu does not as you likely read here. And your young age is a classic IFN indication.
Has Dr said why you are at particular mental health risk? It is a risk with IFN but not for most. And what was the reason for the 2 year limit? IFN can need that long just to get into its best effects. The clinical trials for IFN usually go/went. for many years.
I don't know why he told me I would get depression. When I was diagnosed he told me it would 100% give me depression and/or suicidal thoughts. So it scared me but honestly I'm a pretty positive/extroverted person. I've dealt with anxiety in the past by luckily through therapy I found healthy ways to cope with that anxiety. It started after I was diagnosed so it was defiantly triggered. But this wasn't until after I was diagnosed so not sure why he would tell me that. He has also told me I can only take it for two years.
Today I got a referral for Stanford to get a 2nd option.
Stanford has a good MPN group and I expect you' ll get a very fresh point of view. I think your current Dr may have old fashioned thinking on IFN.
yes. A second opinion is great. Please try to get to an MPN specialist. There aren’t too many around and they are more exact. You’re too young to go to just anyone. Study up, inform yourself. So much info in this website. Hard to believe your doctor made such predictions. Find someone you trust and build a relationship as a team to help you. You’ll be absolutely fine. The beginning is always unsettling.
All the best for you.
Anag
I have been on peg for a year and a half. No depression. They shouldn’t assume everyone will get it.
think you should change doctors as crazy comments for a medical professional. Every drug has side effects listed but doesn’t mean you will get it. I take interferon because Hydroxy was horrendous side effects on me. Our bodies are all different & no Dr can ever guess how it effects anyone . Currently fine on Interferon but I made choices did lots of reading on this subject. Changed my diet completely to non inflammatory & no alcohol . Lots of water & healthy foods . Difference means you feel fit & healthier on these drugs. The food sacrifices are worth a healthy happy time with this complaint that we are suddenly faced with. Lots of walking fresh air helps the mind & thinking positive thoughts help no end . Good luck 👍
hurray! You’re like me! I feel better at 57 with ET than at 42 without. Lifestyle is so important!! Get rid of the packaged foods and GMOs. They are poison. They got me sick in the first place. Our food tastes wonderful again. Pure. I enjoy eating 10x more now. Cooking and eating is sacred in our home. 😉
Reading your comment again I notice your Dr's statement that something is 100%. Medicine, and the rest of our lives, has nothing that is 100%. More reason to get a proper specialist. Wishing you well with the Stanford group.
Hello and welcome to the forum. Glad you found your way here.
Sorry to hear about the issue with your ongoing treatment. As others have stated, HU is usually not the first choice for someone your age (age<60) due to the risks associated with long term use of HU. It is also not recommended for people of childbearing years. Note that if you do decide to have a child, you would need to wait 6 months after discontinuing HU to conceive. Your hematologist should have counseled you about the importance of using effective birth control while on HU. In addition, some organizations now recommend the use of a condom to prevent expensing your partner to HU through bodily secretions. Here is some basic information that you may find useful.
drugs.com/monograph/hydroxy...
online.epocrates.com/drugs/...
oralchemoedsheets.com/sheet...
ethrombo.blogspot.com/2017/...
It sounds like HU may be a moot issue. If your platelets are continuing to rise even at 1500mg/day then you may be refractory to HU. It does not work well for everyone. Nor can everyone tolerate a therapeutic dose. We are all different in how we respond.
I was unable to tolerate HU, experiencing toxicity even at a very low dose. At a higher dose, it was not effective anyway. I have done much better in the interferons, Pegasys then Besremi. They are much more effective and far easier to tolerate. Side effects have been minimal (itching, mild leukopenia). I feel better now then before I stated on the IFNs. I have had no issues with depression whatsoever. Note, that while the IFNs can cause depression for some, most people will not experience this adverse effect. The one caution would be for someone with a prior history of depression.
Another caution - other people experiences with medication do not predict how you will react. We are each different in how we respond. MPNs are rare and not monolithic disorders. That is why consulting with a MPN Specialist is so important. Here are two lists.
pvreporter.com/mpn-speciali...
Meanwhile you ay find these two excellent articles to be helpful.
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
ALl the best moving forward.
Thank you for all the information Hunter. I assumed my Hematologist would be on this list since he is so highly recommend however I don't see him. Referred to Stanford so waiting on a call from them to see an MPN Specialist.
I’ll be straight to the point. It’s horrid that you have this illness more so because of your age.
I was diagnosed aged 60 and for 6 yrs I played cat and mouse with meds.
Platelets up meds up platelets up meds up. I found 17 Hydroxicarbomide and 9 anagrelide along with fatigue and low mood too much to cope with. I requested and got Peg. Could I actually feel lower on Peg than I did on meds?
No looking back! I love my Peg. My haemoglobin is up. How long my body will be able to tolerate it I don’t know.
Injecting is a breeze. I put an ice pack on my stomach prior to jab and don’t feel the needle go in. It’s tiny. I’m the biggest baby out regarding needles.
As for putting toxins in our body- we have no choice.
The option is a heart attack or stroke.
Having suffered a stroke age 50 I was lucky enough to return to work and be 99% back to normal. Others aren’t. They have to give up work and rely on others.
I really wish you well. So glad you’ve found this site. It’s my life line. Sending hugs across the ocean.
Thank you for your response! I appreciate you "feeling me" when it comes to this disease. Yep, it's a total bummer. But the thing that keeps me humble is my Dads memory. He was the strongest most incredible man and passed at the age of 31 from brain cancer. I was only 6 years old. It breaks my heart to think about all the time he missed with me and my brother. So when I have days when I'm tired or down on myself I always think of him and KEEP GOING. I'm here, I'm living....so live. Whatever it takes right? I appreciate your honesty and I'm really leaning towards interferon but waiting on a second option first. I have a referral in at Stanford so fingers crossed. Keep you all posted!
I think if offered interferon straight away I would have declined because it’s an injection.
Regarding your dad I have a young friend a gifted teacher she paid her way through uni. Her childhood was pretty awful. She achieved success only to be struck down by a chronic illness and can no longer work. She’s my inspiration x
Hi there,
Welcome to the site.
You and I share the same diagnosis and genetic mutation. I was diagnosed coming up to 4 years ago when I was 42.
It is daunting when first diagnosed and occasionally it still trips me up but most of the time life is pretty normal. The shock of being diagnosed with a rare blood cancer actually spurs me on and reminds me to try to live my best life.
I’m in agreement with what others have said on here. You are very young to be on a lifetime of Hydroxy and unless contraindicated Pegasys interferon would be a better fit long term.
I personally have experience with both drugs. I started on Pegasys but my platelets stubbornly stuck at almost 1500. Interferons are known to be slow acting drugs. My Haematologist then added Hydroxy in for 6 months to support the decline in my numbers. I personally wasn’t keen on being on Hydroxy long term because it has a high toxicity rating not ideal for someone who might be taking it for 40+ years.
He is correct in saying that if you have a history of depression you shouldn’t take interferon but many people take it for years without many side effects me included. There is a slight disclaimer, I would be lying if I said that it didn’t affect my mood occasionally. You may understand, as a woman, what it feels like to have PMT at your time of the month and I sometimes feel like that on interferon or find myself feeling snappy and with a bit less tolerance. I laugh now and say forgive me I’m having an interferon day. I’m aware of it and keep it in check.
I would seek a second opinion.
This site is amazing and you’ll be able to learn a lot about your condition from the fantastic resources they provide but also the very knowledgeable people commenting. It’s important that you take an active role in your care. It is a rare disease so unless your Haematologist is an MPN Specialist it’s unlikely that he’ll be treating many patients with ET. I learnt very quickly that I need to know as much about my condition as possible so I can have a voice in my treatment.
I find the book below a really good guide to MPN’s. It has been written by two world authorities in MPN’s. I got my copy from Amazon.
Good luck with everything. Keep us updated.
Best wishes,
Joanne x
Hi Zepp! I’m on Pegasys interferon for the last 6 months and haven’t experienced any depression or invidious side effects. I’m 79 and was diagnosed with CALR ET 10 months ago.
I am 39 with ET CALR+ also. Currently on aspirin only but platelets hovering between 875-975. It is tough to accept for a while but becomes easier as the time goes by. I understand the anxiety and deal with some of that too. Just know that this place is helpful and that treatments are constantly improving. I have been told by my new hemo that besremi would be our starting point for treatment once my symptoms indicate. I am interested to hear how you do if you decide to switch from HU. I personally just couldn’t get my head around putting HU in my system. Your body makes interferon naturally which seems like a more intuitive choice for me. Not to mention like Hunter says, interferon has the potential to modify the disease which also makes it more appealing.
Hi, as many others have already posted here I think you would benefit from at least a good consultation with a mpn specialist. Hunter has provided a link to a list of specialists. Good luck to you. Best.
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