Hi, my name is John living in Jersey and I have even on watch and wait for Chronic lymphocytic leukaemia ('CLL') for four years. Recent bloods suggest that treatment may now be imminent and this will be discussed with consultant shortly. No major symptoms although coughs and colds do tend to linger and energy levels not what they were. Thought joining forum at this stage was good idea even if treatment is delayed once more.
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Hi, Barry here.
I am new to this forum so a little bit about me. I will 79 this next birthday and am Type 2 Diabetic. I was diagnosed late last year with Essential thrombocythemia ('ET') CAL-R and started on Hydroxycarbamide + Aspirin. Like many of you whose stories I have read I was quite shocked to get the diagnosis but feel lucky that my GP spotted the rising trend in my blood Platelet results to 800+ which had started the year before and sent me for further investigation. I did initially feel very lost with no one close to discuss it with, as unfortunately my wife suffers from Alzheimerās and is in a nursing home, and I didnāt want to burden my children at that time.
I got over that reticence and finally took both my children into my confidence (lesson learned), wishing that I had done it earlier as the support they give me is fantastic.
I do feel quite tired at certain times but I get out and play golf a couple of times a week and go training once a week. I can feel ok but then its like someone turns the switch off! I spoke to my treatment team who suggested that I might change my treatment time, I normally take the Hydroxycarbamide last thing at night and the aspirin with my breakfast, to the morning. I tried it but felt terrible, bad headache and generally āYukā, so Iām going back to the night routine. Any tips would be helpful?
I am going to spend some time going through previous posts to see what I can learn from other members journeys. I am generally a positive character, as reflected in my login name Neverbloobloo, so good luck to everyone.
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Hi @Neverbloobloo and a welcome to the forum.
A diagnosis as you say is a huge shock and great that your GP was on the case.
Positive that youāre still golfing.
Fresh air and exercise helps a lot.
Family support is so vital and it must be tough for you seeing your wife having to deal with Alzheimerās.
My diagnosis was another Myeloproliferative neoplasms ('MPN') called Myelofibrosis.
You are bound to feel tired at times and important to rest when you need to.
Do take care and Iām sure you will find everyone on the forum supportive.
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Hi @jsyjohn and welcome to the forum.
Itās good that you have felt it the right time to join the forum.
You will find people really helpful and supportive and willing to share experiences.
One thing I have learned is that itās only when dealing with blood cancer you appreciate how tough it is for everyone
Take care
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Hi
I was diagnosed with Polycythemia Vera in February this year after having a heart attack last December. My platelet count was very high and of course, this caused the clot which led to the heart attack.
I have been on Hydroxycarbamine from the first date I saw the Haematologist as I was very high risk for further clots then the result of the JAK2 test came back a few weeks later
I am just coming through a period of fatigue and have started back to work on reduced hours. I am retired but have a market stall which is not hard work. At the moment I am having problems with pins and needles in my hands and also pruritis but feel much better generally and my blood picture has been a lot better.
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Hi @Valf534 and welcome to the forum.
Sounds like a very tough time for you.
Fatigue is such a difficult thing to deal with.
Good youāre managing to live a decent life.
Thereās a number of people with Polycythaemia vera ('PV') on the forum and @Duncan is always willing and ready to offer insights.
Take care
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Hello there @jsyjohn, welcome to the forum and apologies for not greeting you sooner.
Sounds like your Chronic lymphocytic leukaemia ('CLL') diagnosis has been stable and not needed treatment beyond active monitoring so far, also known as watch and wait. As youāre new to the forum Iāll share the great Blood Cancer UK information about Chronic lymphocytic leukaemia ('CLL') in case you havenāt read it: Chronic lymphocytic leukaemia (CLL) | Blood Cancer UK
Having no major symptoms while living with Chronic lymphocytic leukaemia ('CLL') for a few years sounds ideal from my non-medical understanding. I live with Polycythaemia vera ('PV'), which is a chronic and slowly developing blood disorder like Chronic lymphocytic leukaemia ('CLL'), and it affects my immunity too. Know what you mean about energy levels changing as fatigue was my main symptom after diagnosis. I read that something like 80 % of us with blood cancer will experience fatigue, and I know others around the forum find that some slow, gentle exercise can rather counterintuitively improve our energy, letās see if thereās some information about improving energy around Blood Cancer UK: Blood cancer and keeping active | Blood Cancer UK
And @jsyjohn I know of one lovely forum member who has lived with Chronic lymphocytic leukaemia ('CLL') for many years and has offered her invaluable wisdom around the forum, I hope you donāt mind me tagging you dear @Erica but perhaps you have a word or two of support for John?
If youād like to find others around the forum living with Chronic lymphocytic leukaemia ('CLL') to get some ideas of how they get on then just use the search box at the top or Related Topics below.
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Hello there @Neverbloobloo, welcome to the forum. I see dear @DuncanB has greeted you warmly, but accept my apologies for not yet having pointed you towards parts of the forum and Blood Cancer UK that may be useful to you.
Iām sorry to read of your health concerns, especially the Essential thrombocythemia ('ET'). I live with a closely related type of blood cancer called Polycythaemia vera ('PV'), both of which are types of Myeloproliferative neoplasms ('MPN'). Perhaps youāve already read it but Iāll share the great BCUK information about Essential thrombocythemia ('ET') here and Myeloproliferative neoplasms ('MPN') here.
Just like you, my treatment for Polycythaemia vera ('PV') is aspirin and hydoxyurea, although I have a different gene mutation of JAK2. Hereās a little information about CALR gene mutation: What is essential thrombocythaemia (ET)? | Blood Cancer UK
While I am very sorry to read of the Alzheimerās your wife lives with, as do you vicariously, itās great that youāve brought your children into knowing about your diagnosis. Nothing to be ashamed of as we donāt ask for these illnesses, after all. Perhaps your children might benefit from this forum tooādo please invite them and let them know they are more than welcome.
Have to say, your great description of the lights going off with all this is familiar to me! My worst symptom since diagnosis has been fatigue and it was worst in the 3 months after starting hydroxyurea. The impression my haematologist gives me is that slightly adapting my hydroxyurea dose would benefit my energy levels, and so we tried me taking it at different times. For me in the evenings around eating is best as I tend to get a little dizzy with my medicines. In fact I take all my medicines in the evening just to get it over with! The horrible fatigue I had initially faded, so hopefully your energy levels will balance out.
I know thereās many lovely folks around the forum who live with Essential thrombocythemia ('ET') who you might like to introduce yourself to, hereās a thread that might be of interest: ET diagnosis finally sinking in
You can also find others with the CALR gene mutation by using the search box at the top or Related Topics below.
Hope that helps a little Barry, do reach out to others as youāll find weāre a friendly bunch here.
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Hi @jsyjohn and @Duncan I am so glad that you have found us.
Yes, I have Chronic lymphocytic leukaemia ('CLL') and I was diagnosed at 53 yrs old and I have been on active monitoring (watch and wait) for 22 yrs and mange my symptoms on a daily basis. Yes, I am more prone to infections and fatigue is my main symptom to manage.
It is my understanding that consultants take a lot of things, including my blood counts, when considering the benefits of treatments and their timings. I hope that I would be part of those decisions.
I reckon this is a supportive forum and we all share so many similarities. The main thing is that you really look after yourself and remember that all areas of the world might have different ways of making decisions and treament availablities.
I look forward to hearing more about you.
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Hello there @Valf534, welcome to the forum at this difficult time. Iām so sorry to read of the heart attack and diagnosis of Polycythaemia vera ('PV'). I also experienced these, although my heart attack was years ago and may have indicated the Polycythaemia vera ('PV') back then. Iām glad weāre both here to tell our tales, horrible as they are!
I see dear @DuncanB has greeted you warmly and I just want to add that how I really empathise with how all this can feel, but more importantly I want to reassure you that Polycythaemia vera ('PV') can be lived with pretty normally if my experiences are anything to go by.
Like you Iāve taken hydroxyurea since diagnosis with Polycythaemia vera ('PV') as my heart attack puts me at higher risk of clotting. We tend not to be offered hydroxyurea or similar unless weāre over 60 or at higher risk of clotting, from what my haematologist tells me. He also tells me that I am likely to live into normal old age with Polycythaemia vera ('PV') and that it wonāt be what causes me to pass away. This is very reassuring to me, and hopefully will come to feel like that for you too.
As for the fatigue, well Iāve got to say I hate it! It was pretty disabling for me initially after starting the hydroxyurea, and it took about 3 months for my body to get used to the medicine and my fatigue to reduce. Not going to lie, it really got me down when I didnāt know how long it would last. I feared it would be forever, and as an active person I dreaded that. But it lifted, and keeping active helped keep my blood pumping while I acclimatised. I took up yoga again and tried to take walks every day, and Iām pleased that Iām back to hiking. So Iād say keeping active in ways you enjoy Iām sure will help.
As for those pins and needles and pruritis, have you mentioned them to your specialist? Make sure they have noted all and any symptoms you experience and keep note for yourself too Iād say. This helps me notice patterns in my energy and reactions to fatigue and so on.
The itchy skin is annoyingly common for folks living with Myeloproliferative neoplasms ('MPN') and many forum members have talked about using colder water when showering and milder shower gel to minimise the irritation. I note that people have said the itching tends to decrease as blood cell numbers reduce into their normal ranges, so hopefully your treatment will come to stabilise that itching too. Here are some tips for tolerating the pruritis: Itching | Blood Cancer UK
My last suggestion would be to call the lovely Blood Cancer UK nurses on 0808 2080 888 as you can pass your medical and practical queries by them and receive individualised support. They really know their stuff.
Hope that helps a little @Valf534 at this worrying time. Please know you are not alone with that pesky Polycythaemia vera ('PV'), Iāll keep an eye out for you. If thereās anything youād like to ask please feel free and Iāll try to point you in the right direction.
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Hello Duncan,
Thanks for your very informative message. When I was first diagnosed I was told that the condition was not a very common one. However strange as it may be, my next door neighbour, who is somewhat older than me has exactly the same diagnosis! Treatment is a little different in terms of medication quantity and timing . I will check to see if she is also a member or knows about this community.
Thanks again and I will follow up on the links you have given me. Best regards and hope things go well for you.
Barry
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Yes isnāt it uncanny that for such rare diseases we can still chance upon others with them? I have a close relative who was diagnosed with Essential thrombocythemia ('ET') too, so weāre in fine company! Glad to be informative to you.
Do let us know how you get on Barry, and thanks for your best wishes. Iām doing well, just back from camping!
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Hi Erica and Duncan and thank you for reaching out, it is comforting to know there is support/advice available within this online community. When initially diagnosed with suspected Chronic lymphocytic leukaemia ('CLL') a few years ago I was cheerfully told by the consultant that this was the ābestā blood cancer to have (!!) and that treatments are being added almost on a weekly basis. Reassuring to some extent but would still prefer not to have this ticking time bomb in me!
I have a wide experience of cancer, my wife died 7 years ago just 54 years old of breast cancer and I was treated for melanoma in 2002 (surgery only thankfully). I also work two days a week as an emotional support volunteer for a cancer charity. However my own diagnosis of an incurable (but eminently treatable) blood cancer has, at 65 years old,
made realise that life is finite. Anyway thatās enough for now and thanks again for the support.
John
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Oh goodness @jsyjohn, how horrible that the big C has affected you and yours so frequently. Iām so sorry you lost your wife to cancer, and you have your experience of melanoma. Unimaginable that youāre here now dealing with Chronic lymphocytic leukaemia ('CLL') but Iām very glad you found us. Iām in awe that you work as emotional support for others dealing with cancer, thank you for sharing your care.
You know, youāre not the only forum member Iāve read who has been told by their haematologist that youāve got a good one and variations of that! I wonder if I would have felt incredulous being told thatā¦ There is no ābestā to any cancer in my opinionāIād also prefer you not to have to deal with this.
Thank you for sharing what you have John, Iām sure it will reach others and be of support, although please do not hesitate to ask for any support you might need. Now is the time to let yourself be cared for, do please let us know how you get on. If speaking with the lovely Blood Cancer UK specialist nurses would be of interest, do give them a call free on 0808 2080 888.
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