Hello there @suffolkvagabond, welcome to the forum. Iām sorry to read of that Chronic myeloid leukaemia ('CML') diagnosis, and that bout of gout, although you seem to be taking it in such great stride! Good stuff. Itās okay if it isnāt always so stable too and the forum is here for you however you are.
Must admit that I didnāt know there was an atypical type of Chronic myeloid leukaemia ('CML'), but I know we have many lovely forum members who live with Chronic myeloid leukaemia ('CML'), who Iām sure share treatment with you. I happen to take hydroxyurea as well, but for Polycythaemia vera ('PV') instead. If youād like to reach out to others around the forum living with Chronic myeloid leukaemia ('CML') you can use the search box at the top.
May I just say, raising Ā£1600 for Blood Cancer UK is incredible, thank you for supporting us all. Iāll share the Walk Of Light with you in case itās something you might likeāI did it one year and it was really fun and rewarding to be sponsored simply for walking: Walk of Light 2026 charity walk | Blood Cancer UK
Do feel free to share how you get on and any clinical trial resources you think others might benefit from, Iām glad you found the forum @suffolkvagabond.
Hi Everyone! I had my venesection a few weeks ago and I was told to make an appointment for a blood test in mid-September. That means the time duration between by first blood test and the next would be nearly 12 weeks. I would have expected to have had more regular blood tests being a newly diagnosed cancer patient. Any views on this please?
Hello again @BrianP, sounds like youāre settling into your treatments and I think itās a great question about how often youāll have venesections.
Thinking back to mine after diagnosis with Polycythaemia vera ('PV') they were weekly at first as my haematocrit was so high, then fortnightly for a month or two, then settled into monthly for about 2 years. Iām classed as āhigh riskā due to a previous clotting event, but perhaps youāre considered at lower risk of clotting and thus donāt need such frequent checking? Iād ask your specialists about the frequency of your blood testing and what it means when that changes.
Since my blood cell numbers have stabilised I no longer need any venesections. Bonkers, I thought it would be for life! I only have my blood tested every 3 months now, but itās taken 3 years to get to this stability. If you are only needing your blood testing every 3 months I would take that as a positive sign of stability, but again check this with your specialist.
If youād like to speak to the Blood Cancer UK specialist nurses their free number is 0808 2080 888.
Hope that helps a little @BrianP, Iāll be interested in what others share about this too.
Thank you Duncan, it means a lot to me having this forum to turn to. Your comments are reassuring. I will continue to update on my progress and continue to ask for advice as and when needed. Many thanks, Brian.
Hi Iām Vicki my now 19 year old son has been fighting anaplastic large cell lymphoma the past 2 and half years rang the bell twice but now going for doner stem cell transplant and I am frightened that I canāt support him the way he needs without annoying him , I know the journey is like a roller coaster but any tips would be greatly appreciated
I canāt offer advice in terms of how to support without annoying.
I suspect that your son will be feeling lost, maybe angry and even anxious.
I can however offer a perspective of being someone supported through a donor transplant by my wife . I was 59 at time of transplant so not a teenager.
What really helped me was just knowing that there was someone there every day to visit even if was just to sit by my bed while I slept.
Itās important to be guided by the wonderful staff on the Ward. They are really so good at dealing with every patient.
They are also there for you too so donāt be afraid to ask for help if youāre struggling.
A donor transplant is tough. A rollercoaster in many ways. At the same time you have support all the way through it and your son will too.
Sometimes its just a smile and a few words of encouragement is all thatās needed. If you can try and talk about normal things that are going on that takes away the focus from the hospital stay and transplant.
I hope that helps and Iām sure others on the forum will share thoughts.
Hello there Vicki @Victj, welcome to the forum. Iām so sorry to read of your sonās diagnosis, that sounds like a lot of stressful change for you both in quick succession.
I see dear @DuncanB has shared his invaluable advice and Iād agree that having visitors when youāre in hospital feels really supportive, even if we canāt show it. As a former young man I know it was sometimes hard to show loved ones how I felt, certainly at difficult times.
This is the great Blood Cancer UK information about T-cell lymphoma which I believe ALCL is a type of: T-cell lymphoma | Blood Cancer UK
As @DuncanB says, always let your sonās specialists guide you, they can explain where heās at in his treatment and how heās doing.
There are forum members who have shared about their transplants which can be found using the search box at the top and key terms like ātransplantā.
Hi thankyou for your links they are helpful. The staff and support network he has had over all the time through treatments, admissions and appointments have all been fantastic. Once I know how things go I can maybe help once Iāve been in a few days with him I can maybe help others
So sorry to hear that your son is going through this. Iām 51 so a long way from 19 but have just been through a stem cell transplant for Myeloma and am on day 94 of 100.
I hear you when you say you want to support but are worried it may annoy him. 19 is still hormone filled and I can relate as now Iām menopausal! Those hormones are a nightmare on top of everything else - I found the smallest things irritating and was definitely shorter at times than Iād like to be with my nearest and dearest.
I found myself feeling guilty and horrible when I was short with them and instead started telling them how I needed to be supported, which wasnāt always how theywanted to support me. For me this meant almost forming a contract. I promised to keep them updated with everything important related to my treatment and me in general, if they promised to stop asking.
Going through treatment is tough. Mental breaks are so important, itās all so consuming that I found the second I was absorbed in something else, Iād get a message āhow are you todayā and Iād be right back where I was in the middle of mental anguish, to answer that question meant I had to go mentally to where Iād been trying to escape from.
I asked them to talk to me or contact me about the things they would usually talk to me about and not to expect a reply if they were only asking how I was feeling.
I didnāt have visits from my husband or teenage children whilst I was in hospital preferring to FaceTime them, my mum and my friends when I felt up to it. For me hunkering down and getting through it meant I didnāt see worry, concern or worse pity and when I got tired I could just leave. Sometimes putting a brave face on helps you as much as those around you - but itās still tiring.
I know it sounds harsh or perhaps ungrateful - but the important thing about support is, it needs to work for the person you are supporting, so asking them what they need and doing that is the most helpful thing you can do.
Iām not suggesting that he will feel the same as I did, but having an open conversation about what he finds or may find annoying throughout the journey is important and building your defences (as it can feel hurtful) so that you can support as he needs to be supported would be my advice.
This community is 100% here for you @Victj Hoping everything goes well with your sonās transplant and subsequent recovery xx
Youāre very welcome @Victj, do take your time and try not to worry about understanding it all right away. Iām still learning about my own diagnosis 3 years later! Also, itās very kind of you but please donāt feel like you need to offer help at allāthe forum is here to support you right now, like dear @Spangleystar so wisely says.
Got to agree with you too @Spangleystar about taking mental breaks and not really wanting to talk deeply after diagnosis. For me it was already taking up so much headspace that it felt like there was no respite. Having different non-healthcare things to talk with loved ones about was way more distracting. Might it be a good time for your son to indulge in long TV and film series or handheld gaming, @Victj?
Hi thankyou so much for your advice . It has gave me the idea to set up a group chat with the family so that they are not constantly messaging him not that I donāt want them to message but just so itās not lots of times in a day. He has been short with me through his treatment but I had said to him that he could shout scream whatever that I wouldnāt take it personally. You are almost at day 100āa journey that no one truly understands how you feel emotionally and physically unless being on a similar one but even at that everyone is different . I read a story where a gentleman dressed up in a fancy dress outfit and took a picture on day 100
Ahh pleased itās helpful. Just a thought he may not like being a focus of a group that heās not a member of (paranoia can creep in when youāre so unwell), so definitely talk to him about it and maybe heāll want to be added to it even if he just mutes it until he wants to check in. That way he could use it as part of his support network when he wants someone to bring him in something to hospital. My lot were brilliant at sending in care packages.
Sending you so much love, strength and hope. As a mum of teenage boys, I can only imagine what the last few years have been like for you.
My name is Wendy and I am 68 years old. I was diagnosed with Acute myeloid leukaemia ('AML') plus mutations in jan 2023 I had an allograft bone marrow transplant from a babies umbilical chord. It was one of the positives that came out of Covid that these wonderful scientists found this treatment .
I am being treated at the Royal Marsden Sutton by a wonderful team.
Itās not been an easy time with Graft-versus-host-disease ('GVHD') and the backlash from the transplant etc but still here to tell the tale thank goodness. My main issues are stomach related and severe fatigue which seems to be getting worse at the moment.
I have a wonderful husband who has looked after me throughout.
I am readily here to share my journey and help anyone else if they are at a crisis point with their own journey.
Hello @Wendy12345, thank you so much for sharing your story here and for being so generous in wanting to help others too. Thatās so lovely to hear.
Itās good to hear youāve got such a strong team behind you at the Royal Marsden Sutton, and that your husband has been such a steady presence throughout. It sounds like youāve been through a lot! But how incredible about that allograft bone marrow transplant?!
You mention your stomach issues and fatigue are getting worse at the moment. Thatās always worth mentioning to your team at the Marsden if you havenāt already, just so theyāre aware and can keep an eye on it. We do have some general information on managing fatigue that others on the Forum have found useful, if itās helpful: Fatigue | Blood Cancer UK. Thereās also a good thread where our nurses and other members have shared tips on coping with it, which might be worth a look: Ask the Nurses - Managing fatigue.
Our Support Services team is also there any time - 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Thank you again for offering to share your experience - itās really this kind of openness that makes this community what it is, and itās wonderful to have you be part of it.
Take care,
Ceri - Blood Cancer UK Support Services
Thank you Ceri,
I shall mention the tiredness and stomach issues when I have my biopsy on Monday, as I am concerned.
Thank you for all your good work too in helping others.
Itās lovely to read your story and to learn about the success of the transplant. It also highlights those unsung heroes! The wonderful researchers and the ones who looked, and who are looking after you throughout your journey. Your husband sounds amazing!
Iām sorry to hear you are having some issues at the moment and hope these start to improve soon.
Itās so valuable for you to share your story on here and it will be beneficial to many forum members.
Diagnosed with Chronic lymphocytic leukaemia ('CLL') after a BUPA checkup last year and confirmed at SRH. My consultant said I have had this since 2024 and happy to say I am still asymptomatic. Yearly checkups, next one in November, so still keeping positive and āgetting on with my lifeā.
I retired last year and miss the business of work so I volunteer at my local hospital.
a journey that no one truly understands how you feel emotionally and physically unless being on a similar one but even at that everyone is different . I read a story where a gentleman dressed up in a fancy dress outfit and took a picture on day 100