Hello @Conrossmac - glad you have found the forum here - itâs not easy when you get a diagnosis is it and takes a bit of time to adjust so just the time to touch base with others and get some support. I have Essential thrombocythemia (ET) too diagnosed 18 years ago in my mid 40s. I would definitely recommend the charity Myeloproliferative neoplasms (MPN) Voice their website is very helpful and there are lots of online videos and in person events that teach a lot about the condition both from those living with the disease and professionals such as the excellent Prof Claire Harrison, you will also find many younger Myeloproliferative neoplasms (MPN) patients there like you parents and the concerns that go with that situation
Hopefully your consultant is someone experienced in MPNs itâs worth checking and also you have had contact of a clinical nurse specialist in the team to help with everyday concerns going forward and can be specific to your own medical situation. Iâve always found my body lets me know what I can manage and whatâs not so good for me - and finding a perimeter of whatâs manageable is good and knowing at times if you need to rest up a bit before a bigger event or just knowing sometimes bigger events will wipe you out a bit after but still well worth doing and just expect abit of recoup after - itâs a learning process and you will get there- it is also individual to each person thereâs no standard of how anyone is effected and itâs good to tackle however you are just now and learn the process of adapting along the years and enjoy life from what can be done.
Do know many Myeloproliferative neoplasms (MPN) patients have been living with the disease many years and often many years of treatment too which is encouraging when getting a diagnosis at a younger age
Keep us posted how you get along
Hi,
Diagnosed with AITL 2.5 months ago, and have now had 4 chemo CHOP-R.
62 yr female.
Struggling with blood levels- having frequent platelets and blood top ups.
Liz
Hi @stunned I have just responded to your other post.
I would say, I am not a medical person, that you write down all your fears, questions and practicalities for your medical team, no question is off limits and ask for replies in plain English. I have never learnt medical speak.
Really look after yourself and please do keep posting
Hi everyone
I have been in and out of this website for a few years, well, since my husband, who was 59 years when diagnosed with Primary Myelofibrosis on this day in 2018. In 2021, he had a bone marrow transplant, and this year, we were told it had failed. He had a 100% match with his younger brother. Nothing is guaranteed, and we have chosen quality time over quantity. A second transplant is not on the cards, nor is a top-up from his brother. As Primary Myelofibrosis and a failed transplant are not common, it is hard to know how the next stage will play out. Even his specialist doesnât know.
We are from New Zealand, and my husband had cancer a few years before he was diagnosed by a locum Doctor, not his regular. I am finding how people are dealing with PM interesting.
Hi @KiwiSuz I am so glad that you have had the courage to post on our UK forum.
Today and this time of the year must bring up so many thoughts and emotions for you all.
I hope others will share their experiences for you.
I might be wrong, but it seems as if you have some questions that you would like answers to so perhaps you and your husband, if he will let you, might sit down together and write down your fears, questions and practicalities for his next appointment.
You say that you have gone for quality time over quantity but you also want to know about all the options, there might even be clinical trials to consider.
Please do let us know how you get on and really look after yourselves
Hi @KiwiSuz and a big welcome to the forum.
It must be difficult not knowing what the next steps may be and what the options are.
I hope others will be able to share their experiences with you and you find value of the forum.
How are you doing?
Hi Erica, we have talked about everything repeatedly and decided not to do clinical trials. I think there is a time to say no more treatment when they didnât work, and a second transplant isnât an option. Anyway, Iâm not sure why I decided to come on here, as it wouldâve been more valuable years ago. However, now it is more from a carerâs perspective and to read how others are dealing with a terminal cancer partner. I must emphasise that the medical team my husband has been under has been and continues to be excellent, approachable and supportive. There are no complaints in that department.
Thanks, Nichola. How am I doing? Good question, most days ok and others I have had enough of dealing with medical âstuffâ. I keep myself fit and have support if needed though I am not so good at asking for it. Anyway, I am strong and will be okay when it is necessary to dig deep.
I will from now on be more of an observer on the forum.
Oh @KiwiSuz please do use our forum in whatever way works for you.
I hope others will be able to share their experiences
Yes, I agree I am useless at asking for help too.
It sounds as if you and your husband are very close and have really talked his treatment or not through.
Doesnât it make a difference to have such a good medical treatment team too.
I would love to know more about you, and your husband is very lucky to have you, but do whatever feels right for you.
Be very kind to yourselves xx
Hi everyone,
My name is John & I was diagnosed with Essential thrombocythemia (ET) in January 2022. I started taking Hydroxycarbamide which was a 500mg capsule once a day. My platelet count was around 900 at the time. Since then My dosage has increased several times. I am now taking 2x500mg each day for 5 days & 3x500mg for 2 days a week. Iâve been fortunate in that I have had no side effects except for some irritation with mouth ulcers. I was due to have a knee replacement at the onset of my diagnosis but due to the high platelet count they wouldnât operate. My count finally came down to an acceptable level to have the operation last May. I am due to have the other knee replacement op next month but my platelet count has risen again to 552 since my last visit 2 months ago when it was 417. I am frustrated as to why my platelet count seems to yo-yo from one visit to the next. When I talk to my consultant he just seems to up the dosage. Has anyone else had the same problem with their count going up & down?
Thanks for listening/reading.
John
Hi @JHM a great big welcome to our forum.
I have another blood cancer and I find my blood test results do tend to fluctuate and that is perhaps why we do have regular blood tests (called active monitoring or watch and wait) and not one test in isolation.
I am not surprised that you are frustrated because of wanting to get your knee replacement done.
Perhaps you might want to write down all the questions and practicalities for your consultant and ask them at your next appointment and really ask for answers as they know your whole medical history. You need to know because of your knee replacement op.
However others on here might be able to share their experiences.
Please do keep posting how you are getting on and be kind and really look after yourself as you say it must be so frustrating.
Hi
My name is Ali and from Shropshire aged 50.
It all started at the end of July 2024 with me feeling tired come the end of the week, I was a very busy person teaching 7 Zumba classes a week, working 2 book keeping jobs and also running my own craft business enough to tire anyone! That weekend I felt rotten, tested for Covid which was negative but had no energy whatsoever ever! I knew something wasnât right so I contacted my GP on the Tuesday morning who saw me that day, he told me I just had a virus!!! I donât think so I said something isnât right! He then asked me what I wanted him to do! Thinking I had B12 deficiency I asked for blood tests which he replied you had those 12 months ago donât think you will find anything has changed!! But I insisted. The next day I went for the bloods, by 3pm the GP was on the phone asking me to go in first thing on Thursday and also to bring my husband along. Total panic set in,! They donât say that for minor things!!! Thursday morning came and the GP told me I had suspected Leukaemia and I needed more tests and to see the Consultant at the local hospital. I had the call to go in on Friday.
I was diagnosed with what they thought was Chronic myeloid leukaemia. After a long consultation with the lovely nurse and finally coming to terms with the fact that I would have to live with this, the consultant came in and said he was sorry but they had found something else. I also had ALL and it was in blast crisis!! I needed to be admitted straight away and start treatment asap!
It all happened so quickly I didnât really have time to digest everything, the only thing that stuck in my head was the consultant saying how lucky I was because if I had left it a week or so I would to be here to tell the tale!
I had my first lot of chemo over 7 days which wasnât too bad, the worse thing was losing my lovely long hair. After a 7 weeks stay in hospital I was referred to Birmingham, QE to await a stem cell transplant. I was lucky they found a 12/12 match from Germany and I had my transplant on 18th December 2024! This time the chemo and radiotherapy knocked me for six! But I got through it and am now day 56 post transplant, all is good and the transplant took really well!
I do suffer from fatigue and have fallen into the trap of feeling good and taking on the world only to be knocked over the next day! Slowly slowly is the phrase that comes to mind! I still have a long way to go but all is good and PMA is the key!
Sorry for the long post but I now feel so much better after getting my journey out there!
Hi @alip and a big welcome to the forum.
Wow, so much has happened for you in such a short space of time and I can only imagine how difficult it has been to try and comprehend what has happened.
I am so impressed that you pushed for those blood tests. We really do know our own bodies the best but itâs hard to fight against medical professionals isnât it so good on you.
I have lymphoma but found for me, the most difficult time was after all of the treatment when I actually sat down and it all hit me. Iâm glad youâve found the forum because it will help others to read about your experiences and you can share with people that really understand.
Iâm so glad to hear that the transplant went well. What an amazing gift from your donor.
Remember the support line if there if you ever feel like you ever to talk things through.
Blood cancer information and support by phone and email | Blood Cancer UK.
You now have your forum family and we are here for you any time of the day.
I hope you have people looking after you.
Please keep us updated on how you are doing X
Hi @alip I am so glad that you have found us, welcome.
@Nichola75 has given you a brilliant welcome.
I also find it helps me sometimes to âget my journey out thereâ and onto our forum.
We often use the word âjourneyâ on here, but the 2 words that sprung to mind for me were âwhirlwindâ and ârollercoasterâ.
You never got a chance to come to terms with the shock and, also, a big one losing your hair. I reckon the psychological and physical impact must be huge.
I am not surprised that you feel fatigued, just think what you and your body have been through medically, emotionally, physically, psychologically and practically.
Oh, I know that trap and I never learn of of feeling good and taking on the world only to be knocked over the next day!
Slow and steady wins the race and please do keep updating us and be very kind to yourself.
Hello, my name is Kevin from the states (Utah). I was diagnosed with Waldenstromâs 2 or 3 years ago after having Monoclonal gammopathy of unknown significance (MGUS) since 2013. Iâve been on the watch and wait regimen for a few years but it looks like Iâll be starting treatment. Iâve been so tired and had so much fatigue, but I still force myself to walk my dog 3.2 miles a few times a week. But I also take a couple of naps a day. Iâm 64 and have been able to stay in denial until recently. Iâm now scared for the first time. Iâm glad this forum is here.
Thank you, Kevin
Hi @kcsimms welcome to our UK forum.
Isnât it weird at what point we suddenly fear scared.
I think it helped me to find that I was not the only one and that other people also feel similar fears, thoughts and emotions.
I find I need to write down a sort of diary of my symptoms and their severity and impact on my life for my appointments. This also shows cause and effect.
I also find writing down all my fears, questions and practicalities for appointments
I look forward to hearing more about you.
Really be kind to yourself and look after yourself.
Hi @kcsimms
This forum is a life saver! Itâs so useful to share on here as others can really relate to how you are feeling.
I have been on active monitoring for lymphoma for 8 years now and I know I would feel the same as you if treatment was to start.
When is your treatment starting?
I find out on Thursday. My doctor wanted to start me on a clinical trial involving ibrutinib and a new drug which is supposed to limit your total usage to 18 months. Unfortunately, one of the side effects is arrhythmia and Iâve had two ablation surgeries, so no thanks! It looks like chemotherapy and rituximabâŚ
Thanks for asking,
Kevin
Please keep us updated on how you are doing 
New to this site. Thank you for the welcome.
I am joining on behalf of my husband.
He has read no literature on diffuse b cell non-Hodgkins lymphoma.
Diagnosed September 2024.
He has coped quite well so far, just had the 6th RChop chemotherapy treatment yesterday 21st Feb .
I would like to encourage others, by saying the outcome is positive, so far.
He is age 73 years.
He has regained a decent appetite, having lost more than 2 1/2 stone in March,April,May ,June 2024.
Needs anti body treatments in coming weeks.