Hi Sara
Have only just seen your reply. Canāt quite get use to this site yet, things seem to get lost or I find it difficult to find them!
Hope you are keeping well.
Iām generally fine and just carry on as before, it has all knocked my confidence though. I do also get more tired, I also seem to have more aches and pains but then I donāt know if I would have had them anyway.
Apart from the trauma of the chemo nurses trying to get a cannula in, 4 times in one case, my treatment was not a problem.
Treatment is different for everyone,16 months is a long time do you know why they gave it like that?
My IgM paraprotein dropped from 49, and is still dropping a year after finishing treatment, and is currently 7.3 so a good response.
I donāt think of it as being in 'remission ā as I still have WM and am currently back on W & W feel itās more of an āintermissionā until the next time I need treatment, hopefully that will not be for years.
Makes you realise you need to make the most of every minute!
Hello Jacquie and welcome, Iām sorry you are finding it hard at times and even though we have different diagnosis I do understand that feeling of being unwell and constantly tired. I havenāt felt well since my diagnosis 4 years ago which has become normal but does get me down at times. Like you I try to stay positive most of the time but every now and then it gets too much. One of The things thatās helped me is repeating to myself āits ok not to be okā and not being hard on myself for being sad sometimes.
Also I have found that eating well really makes a difference, it wasnāt until my diagnosis that I really believed it could make a difference.
Hi Lynne. You donāt say what sort of lymphoma your partner has been diagnosed with, but I was diagnosed with an unusual presentation of Hodgkins Lymphoma in 2007. I had quite a bumpy ride as mine was aggressive and relapsing, but finally after a SCT in 2009 my team managed to get rid of my unwelcome visitor and I am still here 10 years after finishing treatment.
Click on the 3 lines at the top of the page and this will take you to different topics which may be of interest/help you both, including ways to cope with treatment, fatigue, and being a friend or carer of someone with blood cancer. The support line is also there if either of you need to talk to someone who is not directly involved in your situation. Best wishes
Hi Jacquie, A great big welcome and yes, this is just what our community forum is all about.
Working full time can be tough it was for me and I found it difficult to ask my needs and how both me and my company could both be benefit. A diagnosis is life changing and it really effected me emotionally as well as physically and that was really exhausting. Perhaps we cannot be positive all the time, I am far more emotional now. Please share, if you want to, about the tough times.
Hi Sarah and tess, @WrittleWife, Yes, this certainly is a community forum and with rarer conditions it certainly gets people together. Take care both of you and keep posting.
Hi Roger, welcome to our community forum. I cannot help medically but keep sharing your fears, thoughts and feelings I expect many of us will relate to them, we are all here for you.
Donāt worry I still have challenges navigating this site, but it is worth it because with practice I am getting better with modern technology. I went for my blood tests today after 15yrs on W&W and I still get an apprehensive sick feeling in my stomach.
Hi my name is Colin i am 63 and have recently been diagnosed with CMML,i am still waiting to find out if it is stage 1 or 2.Lots of sleepless nights at the moment.
Hi Colin, a great big welcome to our community forum which I find is jam packed with interesting posts. I bet you are having a lot of sleepless nights at the moment, in the words of the Mamas and Papas (and others) the darkest hour is just before dawn and I find at night my mind just goes into overdrive. Also donāt forget you have received potentially life changing news so I expect you and you body are in shock emotionally and physically. If you feel the need to contact the Bloodwise support line on 0808 2080 888 they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. also we are all here to support you so please keep sharing how you are and how you are feeling and the results of your diagnostic medical appointment.
Good morning! Yes me too I canāt get used to the site and I also lose messages lol!
Iām so glad you are feeling generally well. I also have aches and pains but not sure if that is me getting older or that I have not been as active as I used to be. I find if I sit for a certain amount of time I have back pain etc. Iāve started Pilates to hopefully ease it though.
My treatment was spread over 16 months. I would have my Velcade chemo every week for 4 weeks and my Rituximab once in that 4 week cycle. I would then have 8
Sorry Ann! It somehow sent before I could finish message! Told you Iām Good morning! Yes me too I canāt get used to the site and I also lose messages lol!
Iām so glad you are feeling generally well. I also have aches and pains but not sure if that is me getting older or that I have not been as active as I used to be. I find if I sit for a certain amount of time I have back pain etc. Iāve started Pilates to hopefully ease it though.
My treatment was spread over 16 months. I would have my Velcade chemo every week for 4 weeks and my Rituximab once in that 4 week cycle. I would then have 8 recovery and then start the 4 week treatment again and so on.
My paraprotein at the time of diagnosis was 52 and is currently down to 6. Iām coming up to another 3 monthly check and generally feeling ok thank goodness.
What hospital were you treated at? I have to travel to London UCLH Cancer Macmillan Hospital. Great place.
Sara xxx
Welcome to the forum Colin, I hope you find it a useful place to be. Iām sorry youāre currently waiting for results, I can imagine itās a very worrying time and I hope you have some support around you?
Thank you to you & @AnnD for talking so openly, it must be lovely to connect with someone else with WM! If youād like, can I suggest perhaps making a WM thread in this section - https://forum.bloodcancer.org.uk/c/living-with-and-after-blood-cancer (I can help you with this if youāre finding the site difficult to navigate) as others with WM may find your posts really useful, and it would be good to have them in an easy place for others to find. Take care, and thank you for posting!
Hi Sara and @AnnD I also get a lot of back pain, due to also having osteoporosis and several healed fractured and crumbled vertebrae and pilates has really helped me over time. It also means I have friends in the class and it is the only thing that clears my mind as I really have to concentrate on it. Although I often wear my Bloodwise tee shirt a lot of people do not even know I have CLL, which is rather nice, I am just Erica. I would recommend pilates to everyone in life, however fit, young or old. Please keep posting both of you we are all here to support each other.
Hi Iām Corrina Iām currently bring treated for AML at St Bartās. Treatment is going well but has been toughā¦
Just wanted to wish everyone else well that is having treatment too.
Thanks
Hi Corrina, great tp read your first post, you are really welcome to our community forum.
I have CLL and I am lucky enough to be on watch and wait. Although I was diagnosed 15 yrs ago I still get a yukky feeling before medical appointments. What I have noticed is that we all seem to share similar fears, thoughts and feelings and we are the ones that seem to really understand. Often my thoughts come on in the middle of the night. How are you?
I was diagnosed with AML in 2015, its always nice to āmeetā another patient (though I know it sounds odd to say its nice but hopefully you know what I mean)
I was treated at Lincoln hospital in Lincolnshire so I was the only patient as its a rural area and I am quite isolated here so this forum and social media has been a godsend to me.
How are you feeling at the moment? Donāt worry about being open and honest here because I have found it very beneficial, from my experience you canāt always do that with loved ones.
As you say treatment is very tough, I remember it very well, its still very fresh in my mind. nothing you are feeling, dealing with physically or emotionally is unusual and what I mean is it can feel like you are the only one and some of the feelings are āsillyā but there is probably nothing I havenāt felt or thought.
Please feel free to ask me anything, Iām happy to use my experience to help if I can