Hello all, lurking for a while, my wife even posted on my behalf, but now feeling like Iād like to help others who use Google against their better judgement
Diagnosed with histiocytic sarcoma with growths in liver and spleen back in November after spending 8 weeks in hospital with sickness and fever.
Initially relieved to finally have a diagnosis as I felt more Tumor than man but the prognosis being measured in weeks rather than months if left untreated brought me back to earth quickly.
Chop chemo fortnightly for 8 cycles and trametanib daily and Iām now back on my feet with hope that Iāve got a life ahead of me for at least a few years.
This is really just a post to introduce myself and for people in future who get the diagnosis to see.
Thereās very little positive news online to search other than a few case studies and obviously professionals are very guarded when offering any prognosis as it is historically poor.
I know if I had seen a post from somebody who had made it through chemo and was feeling positive, it would have made those hopeless days a bit easier.
Hi @Wullysamba I am so glad that you have had the courage to post.
Yes, āDrā Google is perhaps not the best idea especially with some blood cancers that have such generic symptoms. It is best to go to a GP and get checked out.
It sounds to me that perhaps you have had scary times along the wayā¦
Thanks for sharing your experiences and we and the Blood Cancer UK support line on 0808 2080 888 are there for you and your wife too, look after yourselves.
Hi @Wullysamba, thank you so much for taking the time to share this and for raising awareness by doing so, too. It sounds as though youāve been really been through a lot. May I ask how youāre doing? If youād like to talk things through or need support, youād be so welcome to call our support line (0808 2080 888). Take good care of yourself.
Doing great and feeling the best Iāve felt in a long time. Bordering on my old normal at times.
Very promising pet ct scan results with only one small piece of active tissue left in the liver. The radiologist thinks it may be scarring from a biopsy but thereās hope that trametanib and dabrefemib will taken care of it even if it is cancer related growth.
Iāve now outlived the 6months that is detailed in so many case studies so my next milestone is 1 year.
There seems to have been a few breakthroughs in management with the Braf inhibitors now approved for use in England, so hopefully the research keeps going and I might make it to 40
Hi @Wullysamba I really believe in celebrating the little wins and also how you feel. My life expectancy was 5-10yrs and that was 19 yrs ago.
Look after yourself
Hi, my name is Alastair and I am 61 year old, from Glasgow, diagnosed with SLL non Hodgkinās lymphoma in April, which was a massive shock as I felt absolutely fine. However, my lymph nodes were swollen on my neck and underarms and I started treatment 2/3 weeks ago. I have completed 3 rounds of obinutuzumab and am starting venetoclax next week. I couldnāt believe the difference after my first dose of obinutuzamab as most of the swelling on my face / neck disappeared with 24 hours. So far, I have been lucky with side effects and other than getting a few headaches and feeling tired, I have been absolutely fine. A long way to go but I feel so much better, both mentally and emotionally since I started treatment!
A great big welcome to our forum @Almac
Gosh things have really been full on for you since April, what a shock.
I think my emotions have been on high alert since I was diagnosed 19yrs ago!!!
I am glad that your treatment. has made such a difference.
There is a lot of information on the Blood Cancer UK website.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888
The main thing is that you really look after and be kind to yourself and keep posting
Hi @Almac and a
big welcome to the forum.
Isnāt it amazing how treatment can make such a positive change so quickly!!!
Iām glad you are feeling well in yourself and look forward to learning more about you
Hi @Almac, thank you for sharing and welcome to the forum. Itās so very understandable for your diagnosis to have come as a shock, and youāre certainly not alone in that. Itās reassuring to hear youāre doing better after starting your treatment. However things are for you, youāre most welcome to reach out to our Support Team if youāve any concerns, or just feel like youād like to talk things through (Blood cancer information and support by phone and email | Blood Cancer UK). Erica mentioned we have information on our website, which youāre also so welcome to take a look at if itād be useful at all (thereās diagnosis-specific information and general information, too- www.bloodcancer.org.uk).
Take good care of yourself, and do keep us updated.
Hello I am a 76 year old female and have just been diagnosed with a Cal-r mutation causing abnormally high platelet count. I will be starting Hydroxycarbamide medication on Wednesday and I am feeling anxious about side effects.
Hi @Burnee and welcome to the forum.
I think feeling anxious is completely understandable. I hope that others will be able to share their experiences with you.
Have all of the side effects been explained to you? Please do let us know how you get on
Hi @BurneeI am so glad that you have found us.
Gosh, I would be in complete shock, scared, anxious and worried about the unknowns.
Perhaps it might be an idea to ask your specialist, nurse, consultant or GP about side effects as they know your whole medical history .
I will however copy your post to the Blood Cancer UK nurse advisers @BloodCancerUK_Nurses for you and if you would like to speak to the Blood Cancer UK support line they are available on 0808 2080 888.
The main thing is that you really look after and be very kind to yourself and please let us know how you get on
Hi Iām Colette, not sure what to write really. Just got my diagnosis today of Chronic lymphocytic leukaemia (CLL) and am a watch and wait.
Itās been a long and nerve wracking wait for the immunophenotyping to come backā¦donāt ask me to spell that againš¤ so as of 11.30 today I have Chronic lymphocytic leukaemia (CLL).
My husband has breathed a sigh of relief. "It isnāt more seriousāā¦and Iām likeā¦what!!!
Hello Collette and a big welcome to the forum.
Itās so great that you have found us so early in your journey - I wish I had.
We all remember the day we was diagnosed and I donāt know about you but my emotions were all over the place. Iām on watch and wait for lymphoma but struggled with the watch and wait early on. How are you feeling about it all?
Iām not going to ask lots of questions - just wanted to let you know you can say it how it is for you in the forum. Nothing is too silly or to small.
There will be so many who share the same diagnosis as you and who are on watch and wait who will be able to share their experiences with you.
I can only imagine how you are feeling tonight - itās a hard one for others to understand and I get why your husbands comment surprised you.
Please keep posting. The support line is there if you need it and so are all of us.
Please take care of yourself - go with your emotions and just take each day at a time. X
Hi @Colette I am so glad that you have found us.
I also have Chronic lymphocytic leukaemia (CLL) and I was diagnosed 19yrs ago and I have always been on watch and wait or active monitoring.
I donāt say that just to make you feel better because I expect you are still in shock and that your thoughts and emotions all over the place.
When I was diagnosed I felt in a bubble with the world going on around me.
I also found that family, friends and work colleagues tried to make me feel better.
I also found it difficult to answer why I was not immediately having treatment and be ācuredā, because I could not answer it myself.
So as from 11.30 yesterday you are part of our forum family.
My husband goes around with his head in the sand, so this is where I can say how it really is for me.
There is lots of information on the Blood Cancer UK website and if you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Any questions I am here, I still havenāt learnt much medical language.
Really look after yourself and be ever so kind to yourself and please keep posting
Hello @Colette,
Welcome to the Forum. I hope you are doing okay.
The Forum has a fabulous support network and Iām sure that there will be lots of advice and tips from others about all things related to Chronic lymphocytic leukaemia (CLL) and having a blood cancer diagnosis. Nothing is too odd or ridiculous to ask on here; should you ever have a question or thought that you want to run past others.
I also just wanted to let you know that at any point, should you have questions or need further support please do get in touch with our support services team.
Do take care of yourself. Best wishes, Heidi.
Hello @Burnee
How are you feeling today?
Sorry to only just spot your post about your new diagnosis and starting treatment.
Did you get the medication yesterday?
I am sure youāll be fine with it all - however, do be honest with your Haematology team if you are not feeling well. Most people have no problems with Hydroxycarbomide (HU) and tolerate it well. I think for lots of people itās the thought of it being āchemoā and taking it at home, that is worrying.
Your Consultant may well have mentioned that youāll need blood tests a bit more regularly in the first few months, but once your blood counts stable out, this will be less regular. Dose adjustment varies from person to person, so you may need a few more or a few less tablets per week so do not be worried if this is suggested to you - itās very common.
Do drink more water to help keep you hydrated, this also helps if you do find youāre feeling more fatigued.
Please do get in touch with us at any point if you have questions or need more support.
Take care, best wishes. Heidi.
