Thanks Nichola75
First time posting on forums so I did not know what to expect, in some ways I still donāt know what I will get out of it. However, with all thatās going on at the moment I find it is becoming a distraction in a weird way!
I will continue to post regarding treatments etc.
Thanks again
Chris
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Hello, my name is Kevin from the states (Utah). I was diagnosed with Waldenstromās 2 or 3 years ago after having Monoclonal gammopathy of unknown significance (MGUS) since 2013. Iāve been on the watch and wait regimen for a few years but it looks like Iāll be starting treatment. Iāve 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. Iām 64 and have been able to stay in denial until recently. Iām now scared for the first time. Iām glad this forum is here.
Thank you, Kevin
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Hi @kcsimms welcome to our UK forum.
Isnāt 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.
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Hi @kcsimms
This forum is a life saver! Itās 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?
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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 Iāve had two ablation surgeries, so no thanks! It looks like chemotherapy and rituximabā¦
Thanks for asking,
Kevin
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Please keep us updated on how you are doing 
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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.
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Hi @Roisin yes, welcome and thanks for sharing where your husband is at and how he is doing, that is what our forum is all about.
Some people like to read everything about their conditions, others donāt, there is no right or wrong.
However our forum is also about support for you. How are you doing?
You obviously support your husband so well and i reckon that partners/carers are often the unsung heroes and sometimes apart from us who asks about you?
I look forward to hearing more about you, really look after yourselves
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Hi, I am Pippa. Today my 85yr old partner was told he had Acute myeloid leukaemia (AML). He is too old for agressive treatment but is going to be given the chemo injections and pills. He laughs it off but J am so scared and sad. I have to nention that 5years ago next month, my daughter died of a brain tumour and I nursed her for the last 6 months of her life. She was 47yrs old and newly separated. Now I have to do if all over again. And I donāt know if I can cope this time.
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Hi @Weatherwax15 I am so glad that you have had the courage to post and join our forum family. A great big welcome.
I am not surprised that you are so scared and sad, perhaps you are also in shock with thoughts, feelings and practicalities flying round in your head, I would be. I find anniversaries are also so hard.
Now I know this is very hard, but perhaps just try and keep it one day at a time. It is all I can manage
The Blood Cancer UK Support Line is there for you on 0808 2080 888 and we are here for you to say how it really is for you.
Please do look after yourself as well as you do your partner and be very kind to yourselves, I have learnt that everyone deals with things differently, there is no right or wrong.
Please do keep posting how it really is for you.
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Hi, I was found to have high platelets and also very anaemic. Was on hydrea for 6 weeks with no positive outcome, I was also diagnosed with jak2 and Carl mutations in bone marrow. I am now on javafi 200 mg and inject aranesp 300 mg every 3 weeksā¦no sign of platelets coming down but do find the fatigue completely debilitating, has anyone else this problem. My problem is probably not as serious as some who are on this site. But I do find my quality of life has altered greatly. I suffer with nausea and strange sensation taste in my mouth but thank goodness have avoided mouth ulcers. Hope I donāt come across as a moan but wonder how everyone else copes with similar problems, regards Cathy
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Hi @Cathy6 please do not worry about coming across as a moan, it certainly did not cross my mind.
I will copy the Blood Cancer UK details on fatigue
Fatigue | Blood Cancer UK
It took time for me to get to know myself and cause and effect which set off my fatigue.
Since my diagnosis I do not deal with what personally stresses me well.
My fatigue can also be triggered by medical things, emotional, physical, psychological and practical things.
I also write down all my symptoms, fears, questions and practicalities before appointments
Please do keep telling us how you are getting on and be very kind and really look after yourself
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I really appreciated your reply.thank.you as yes the non ability to do the simplest chores without feeling weak or having to sit down gets to meā¦I sometimes wonder is it all in my imagination.although I know the blood results show a different pictureā¦itās reassuring to hear others are experiencing the same reaction 
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You definitely donāt come across as having a moan. Inherent where you can say how it really is for you. Everybodyās journey is different but it has a big impact on us all and Iām sorry to hear your quality of life has altered so much. Itās a big change and I think itās only natural you feel the way you do.
Please keep posting and I hope you find value in sharing your experiences x
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Hello everyone.
Im Mike from York.
Recently diagnosed with Chronic lymphocytic leukaemia (CLL) on 10th April.
Confused, concerned, annoyed, frustested and so on.
Now on active monitoring and trying to come to terms with everything.
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Hello Mike,
I am Lee, also from York. I was diagnosed with Chronic lymphocytic leukaemia (CLL) last November and am now on active monitoring.
Not doing too badly with it, to be honest, my biggest issues are co-morbidities. It seems to have been one thing after anotherā¦ Have always felt quite healthy, I eat well and go running/swimming, am a good weight, donāt drink/smoke, but seem to have much worse health at 60 than most. It all seems very random!
Have you seen a consultant yet? I saw one at York Hospital and he was very reassuring. Do you know your numbers? I will be monitored by my GP, which is fine by me. Have been given a nurse practitioner to contact with queries, which is helpful. If you do not yet have one, am sure you will be sent the details soon.
Anyway, just wanted to stop by and say you are not alone. This is a really friendly site and a helpful space to vent or ask for info. The Chronic lymphocytic leukaemia (CLL) association is also good, although quite intensely medical, not sure I need that yet! That is, much of it seems to be from people who are not on active monitoring but various drug protocols. Their videos from past conferences can be interesting though, I found it helpful to literally āseeā others with this illness and how they are (often) thriving. Exercise seems to be a big key to keeping our numbers in the best range.
Oh, there is also a blood cancer support group that runs at York Hospital. Might be worth exploring?
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Hi @GenesisDevice and welcome to the forum.
Reading your post, I remember when I was diagnosed with Lymphoma and all of these words were ones that described how I was feeling!
Active monitoring is such a hard thing to get your head around and 8 years on I still struggle sometimes.
However, I can honestly say it does get a little easier day by day and itās not on my mind every minute or every day.
Really important that you talk about how you are feeling - when you are ready of course.
The helpline is amazing and I really benefitted from counselling.
You must have so many thoughts and questions and a rollercoaster of emotions.
I hope the forum helps you to feel less alone. It really helps to have people that understand.
Here is the support line if you need it.
Please keep posting and letting us know how you are doing.
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Hi @GenesisDevice a great big welcome to our forum and your thoughts and emotions seem pretty natural to me.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 21 yrs ago and I have always been on active monitoring.
I am now monitored by my GP surgery which is great as it it far more local and convenient.
If anything becomes amiss I will be fast tracked back to my hospital.
I would say that you have probably had a great shock so just give yourself time.
The Blood Cancer UK website has lots of information on it when you feel ready.
@Nichola75 has given you their support line details if you need it and we are all here on our forum.
I look forward to hearing more about you and look after and be very kind to yourself.
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Thank-you for your kind reply.
I think its just a bit raw for me at the moment.
Very confusing and upsetting as im sure you can appreciate.
I think the next few weeks will allow me time to reflect ang get my mind straight.
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Thank-you. Everything is a bit confusing but im sure in time it will become easier to manage
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