Me again. Those of you on chemo meds for et are u able to function normal? Like work, not feeling I'll? No hair loss etc
I guess am trying to accept I may have et before my diagnosis
Et treatment : Me again. Those of you on chemo... - MPN Voice
Et treatment
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Irishgal12
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It’s definitely tough to accept, I can completely empathize with you there. Re taking the hydroxyurea - for me personally it hasn’t had any effect other than making me way more conscious of sun exposure. I drink a lot more water now as we’re supposed to, but that’s a good thing. My platelets are now in normal range, also good. I work, exercise, travel - none of that affected. There are a great many people on this forum who’ve taken HU for years - decades - and are just fine. If you do start taking it, I’ll bet you’ll be one of them!
Thank you glad your doing ok. I guess I just imagined chemo drugs to be like chemo. Also worried I will never be able to have another baby
I think the HU is really low-level chemo medication, and is generally well-tolerated, which is why it's used so often. And regarding getting pregnant, it's definitely best to talk to your doctor - I'm certainly not an expert in that field!
Hydroxyurea (aka hydroxycarbamide) is a commonly used med for cytoreduction in treating ET. Many people tolerate it, but not all can. The NIH in the USA notes that HU is a "highly toxic medication with a low therapeutic index." You asked about hair loss specifically - alopecia is one of the common side effects of HU, but not everyone experiences it.
I am one of those who is HU-intolerant. (Note that the first 2 times I was on HU I did not experience issues). I had toxic effects even at low doses during my most recent course of HU. However, I would never advise someone else to not consider HU if in fact they need it. ALL medications have a risk/benefit profile that needs to be considered. You also have to look at the actual symptoms you are experiencing with ET and how much risk you are at. Most common would be the risk of thrombosis, but some conversely experience hemorrhage. DVTs, TIAs, and other potential symptoms are clear indicators for the need for cytoreduction. Many docs have moved away from the routine use of chemotherapy for all ET patients. In the "low risk" groups, (age less than 65, platelets below 1 million, no symptoms) many docs opt for aspirin-only and monitor.
If you do need and opt for HU for cytoreduction, there are some things you need to know. HU is teratogenic - it causes birth defects. Patients on HU who want to have a child are advised to wait until after discontinuing HU (1 year for women, 6 months for men). After that, it is OK to have a child. HU is also a mutagen and a carcinogen. It passes into vaginal secretions and semen. Sexually active couples are advised in some of the patient education materials to consider the use of a condom to protect the partner not on HU. You may also see a warning that the partner not on HU should wear gloves if handling the bottle of HU (especially women of child-bearing years).
So that may all sound really scary, but know that many people on HU benefit from it and do not experience significant issues. With HU or any other medication, you have to carefully evaluate the risks and the benefits of the medication. If you are in a low risk group, your ET treatment does not necessarily need to include chemotherapy. One of the things you will discover is that many docs, even hematologists, have little experience with MPNs because they are so rare. It is very important to consult with a doc that really is a MPN-expert. Here is a link to patient-recommended docs with MPN-expertise mpnforum.com/list-hem/ . I have to travel 2 hours to see the MPN consultant I use. He consults with my local hematologist and me regarding my treatment. Totally worth the time and trouble to travel a bit.
FYI - it sounds like you are new to your ET diagnosis. I was diagnosed with ET over 30 years ago. It progressed to PV 6 years ago. Still alive and kicking! The toxicities I experienced with HU were bothersome, but did not interfere much with daily activities. HU toxicity usually abates once you d/c the medication. So - please try to not worry too much. Know that you can live a long, good life while managing ET issues along the way.
All the best
Thank you I hope it's not et. But how would I see a mpn Specialist under NHS if needed
As I understand your healthcare system in the UK it is possible to see a specialist outside of your normal local healthcare system. It may cost more, but I have heard of others doing it over on your side of the pond. A few have made comments about switching their hospital base to have access to regular care from MPN experts. I am fortunate in my health insurance that it does cover the MPN Specialist I consult with. I would pay out-of-pocket for this if I had to because it has been so valuable to my MPN care.
Do u know if life expectancy normal
Life expectancy is near normal when you look at broad numbers of ET patients. I was diagnosed in my early 30s. At Age 64 still going strong even though the ET progressed to PV. What you can expect is some challenges related to managing the ET, but each person is different in what they experience. I have been almost asymptomatic for MPN symptoms, even with the PV. I have had more trouble with the JAK2 related increase in inflammatory cytokines leading to systemic inflammation (e.g. osteoarthritis, eczema, planters fasciitis, insomnia, etc.).
So the short answer is, it is unlikely that ET would be life-threatening in the short-term. There is a risk the ET will progress into something more serious like myelofibrosis or CML, but most people do not experience that. Those who do usually experience the progression later in life. I was about 58 when my ET progressed to PV. I have other issues that are more serious (recent brain tumor - resected, atrial tachycardia - heart catheter ablated, current bone tumor - type unknown). I certainly deal actively with my PV treatment, but it is not the most serious issue I face. That has really put the MPN in perspective for me.
Sounds like the next step is to verify your diagnosis. If it is ET, then do you have the JAK2, CALR, or MPL mutation - or are you ET-triple negative? If JAK2+ then what is your mutant allele burden? Once you have a verified diagnosis, it is time to educate yourself about your diagnosis. This website is a great place to start. Educated patients make better decisions. Assertive patients receive higher quality care. Passive patients do not.
All the best to you.
Sorry to hear your issues
I thought et was common over 50 but from those forum seems younger people are diagnosed. Is it common for et to progress into pv or cml
It is not common, but it does happen. I have not looked at the research recently, but what I recall is progression to CML/AML was something like 1%-3%. Progression to MF was up to 18% - but that happens years down the road. What is important to understand about these statistics is that they only apply to broad numbers of people. It is not a specific prognostic prediction for any one of us. Use the numbers as general risk indicators - not a prediction of your future. In my own situation, progression to PV is a kind of muddy situation. Was it true progression or did I have a masked PV all along. Answer is unknown. At a certain level it does not matter since I have PV now. I am fortunate in that I have a relatively indolent version of PV. Many folks with PV have a rougher time of it than I do, so I consider myself relatively fortunate.
Below are a few resources you can look at. There is plenty out there. Stick to reliable resources and publications in recognized professional journals. There is also some junk out there - so sometimes you need to sort the wheat from the chaff. Also - don't let the information cause you undue stress - just because something can happen does not mean that it will happen.
Good general info on ET and good site to know about.
mpnresearchfoundation.org/E...
Masked PV
medpagetoday.com/resource-c...
Some basic statistics on progression
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
Expect to do a good bit of secondary reading if you dive into the professional literature.
Been on Hydroxy for 1 year and feel better. Less fatigued, less bone and muscle pain, spleen going back to normal size and not cramping.
If your hesitant you could try for a couple of months and see how they go. If you dont like then you can stop.
I have been getting knee pain and cramps is that a symptom of et
Could be. But depends on what your general health is. If you eat healthy (plenty of vegetables) keep active, drink lots of water and you keep getting cramps, then it could be ET.
Because an unhealthy person without ET can get get cramps from lack of minerals. Or no vitamins for knee lubricantion and repair.
I use self-massage and stretching for relief.
Mmmm I dont drink much water to be honest
We must keep hydrated all the time with our treatments
Does water affect platelets
Keep hydrated is healthy for us all around anyway, especially taking Hydrea which is chemotherapy in oral form, best for us to drink at least 2 litres water daily.
My doctor said hydration affects your platelet levels. Like many here I drink 2 liters of non-caffeinated liquids daily. Also, Hydroxyurea isn’t at all like the strong chemo used by most cancer patients. It’s extremely well tolerated by most patients. Katie
Hi. I am on Interferon injections and have been ever since I was diagnosed 8 years ago due to very high platelet levels.
Just to answer your question about the baby, I have had three healthy children since being diagnosed and on treatment. I continued taking it throughout all of the pregnancies and was closely monitored.
I am 32 now x
That's good to hear I am not even diagnosed am just worrying over everything and thinking of all possibilities. Have u any effects on your meds
I understand. Its great you can speak to people who are going through the same things. I had no idea what any of it was at the beginning.
When I first started the meds, I did have lots of side affects. I had some hair loss and lots of sickness/flu like symptoms.
However after a couple of months they all eased. Now I just have to deal with extreme fatigue which can be hard with three young children but I manage to work full time with a demanding job.
Hope that doesn’t sound scary but yes there could be some side affects but it varies for everyone and all I kept thinking was it could be worse!! Its much better to be treated!
Are you being well looked after? Xx
Hair loss as in completely? How did u cope feeling so I'll pregnant?
Well I have first haematologist app 22nd jan so I have no idea yet they want me to get bloods done prior including et gene test and cml I have been really stressing
Try not to stress. That is the worst thing you can do as it affects your levels.
Not hair loss completely just thinned a lot and lost a few bits. Some people I have met have not experienced that though.
You will know more after your appointment . What makes you think you have one of the conditions? X
Really stress can increase platelets? Am always stressed suffer from health anxiety. Platlets have fluctuated for 6 years up then down my norm seems to sit around 450 454. This time 574. I dont know I guess I googled too much
Try not to google! There are some scary things on there. Its best to let the consultants tell you.
I dont know for certain if stress can increase them but they told me if can have an affect. I was told I got ET from stress or an infection bur they couldn’t find any infection at the time. They dont know what caused it or what does in anyone but my consultant thought stress can play a part.
400-450 is about the normal range so try not to worry too much xx
Thank you are you from England
Yes are you?
Yes wigan
I have no symptoms aside from sore knees leg cramps not sure if that's related
I started Hydroxyurea as a trial for symptom management. I feel much better on it. I don’t have side effects other than sun sensitivity and my dry skin is a bit more dry. I had a little nausea in the beginning but I don’t now. No hair loss for me. My fatigue, headaches, and flu-like symptoms have improved greatly on the HU. Everyone is different of course, but for me it’s been a blessing.
HU is not safe for pregnancy so if you end up diagnosed and if you require treatment, interferon will be the safe option for you during pregnancy. I have no experience with interferon so hopefully others chime in.
I have been taking HU for decades with absolutely no side effects. I do everything normally, And my blood is normal!
Hi there. I can see you’ve been worrying yourself into high anxiety all over Christmas! I doubt there is much we can say that will quell your concerns until you see your haematologist. But please put to the front of your mind:
1. There are many reasons why platelets can be elevated.
2. At 574 your platelets though out of normal range are not alarmingly high.
3. Even if you are diagnosed with ET the fact that your platelets are slightly elevated and the fact you are young (and on the basis you have no other major health issues and have never had a stroke or other thrombotic episode) I cannot imagine any haematologist will put you on Hydroxy or any other drug. In fact they may not even put you on aspirin.
4. The protocol for commencing drug treatment for an otherwise healthy person with ET is age 65 or more or platelets greater than 1500. Chances are you will be a grandmother by then!
5. Hydroxy is ‘chemo’ with a very small ‘c’. No, your hair doesn’t fall out and there’s no reason why you shouldn’t function entirely normally.
And what’s more, the understanding, management and treatment of MPNs is moving at an incredible pace so who knows what we’ll be advising on this Forum in a year’s time, let alone five, ten or twenty years.
It seems you are in the hands of a good GP and haematologist team. And that’s what matters.
So please, please enjoy your family and this holiday time.
Thank you so much your comment means the world to me. Your right I hand been tortured myself xx
Chemo medication hasn't effected my husband at all no side effects .
He works full time in a very demanding job.
The word chemo scared people .
My husband is on jakafi and before that hydroxy.
He's been fine both have helped and eased his symptoms .
Tracey
Hi, I posted a very similar thing before commencing peg Interferon (90mg) some months ago for ET.
I didn’t have any hair to lose so that’s not applicable to me😀
I have my injection at 6pm on a weds and work from home on a Thursday.
Physically the symptoms range from light flu like muscular pains to feeling a bit tired. VERY manageable. Mentally I do feel a bit “wired “ and have been known to get a tad grumpy but again VERY manageable.
When I posted similar I found the responses to be very positive and, if I’m honest, I wasn’t sure if people were just playing down any possible side effects. But I can genuinely say that, in my case, it really isn’t that bad.
I’m self employed (which helps) but work long daily hours and my work, touch wood, hasn’t been affected in any negative way.
If you have to embark on any treatments then the only additional advice I would give is make sure you eat and drink sensibly and try and keep fit.....these are staple pieces of advice (given regularly by the wonderful people on this forum) but remain 2 of the most important things.
And lastly remember “There’s no point in worrying about things that worry won’t help”
Xxx
This is a difficult one to answer. Initially I couldn’t wait to start meds. As soon as platelets lowered I felt more myself. Even so it’s taken at least 3 years for me to come to terms with diagnosis. Then every time platelets rose and meds did too I’d feel sorry for myself and sink into low mood. Eventually I was put on anagrelide as well as hydroxi. Only recently just dropping 1 tablet (anagrelide)a week I feel bril. I’m anaemic though.
We are all very very different. Our bodies react differently. Circumstances are different. I’m retired so able to cope better. Just tell yourself it’s better to have ET than other horrid illnesses. That keeps me going.
Good luck and keep me posted
Xxxxx
Thank you I was so worried about et but now am hoping it's not cml which they are also testing for
When I read your post I looked into that too. It still seems to be positive. When will you get your results? X
Am assuming that they are standard tests they run for high platelets as my wbc was normal. I havent been seen yet app 22 jan and I have get bloods done 2 week before results available at app
the hydra med made me extremely fatigued at first, but now (3 years out) I am pretty much back to normal, but I need a nap after lunch. I am a 71 year old white male.
It helps me to get consistent exercise, cut back on alcohol, and get adequate sleep.
My platelets are back to normal, and I have had plenty of people tell me I have the same life expectancy as any body else.
That being said, you could get hit with a "fatigue bomb" , out of the blue, and you will simply need to get some serious rest. Happens to me about 3x/yr. My doctor traces it to the medication.
Good luck!
VMS
Hello, yes I have et and take chemo tablets...I do function normally but have had to go part time at work as too tired for full time ... no hair loss ..the only real difference is skeletal pain ....but am waiting to find out ( via blood tests ) if it is to do with et or not ...been on hydra almost 1 year and do feel better than before I was treated.... hope this helps ...lainie x
My mother has suffered “brain fog” fatigue which has lead to loss of confidence. And she is about to Anagrelide. But lots of people on here seem to take it with no side affects. You really won’t know without trying. It is a shock at first but life does go on. Good luck.
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