Wanted to let you all know how I was getting on, unfortunately its been confirmed that my CLL has transformed into Richter's syndrome, to say I was devastated was an understatement, biopsy result confirmed my worst fears, I started on an intensive chemo DHAP and Rituximab on the 11th March had to stay in Christies until 15th March, can honestly say its floored me, its not been helped that I got a chest infection and had to be re admitted last Friday, came out yesterday, but I'm still floored....
Going from an active 43 year old to feeling like I'm 90 is just not me, I'm just hoping each day gets easier, as this cough is driving me nuts !!!...
Spoke to my consultant in great length and the plan of action is now to get me in remmision with the chemo and then cord cell transplant, I've been given all risks, but I don't think I have a choice, I'm going to fight this all the way as I've got so much to stay positive for...
Would love to hear from anyone going through anything similar or any tips on cough remedies !!!...
Keep trucking peeps
Love and hugs Jan X
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JanetG
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Jan, you stay positive and fight your way to a recovery and I know every single one of us will be with you in spirit as you do so! This is something that we all live in the shadow of and I know they'll be members along soon who can give you much better specific Richter's advice than I ever could.
You're having such a rotten time and a hacking cough is miserable and painful. I'm vulnerable to chest infections and have learned to love nocturnal tv when the physical action of laying down brings on constant coughing. I found lozenges and fluid were the only thing that kept the area moist and less irritated.
There's times when this condition makes me so angry and resentful and this is one of them. Stay strong, optimistic and full of belief.
Hi Jan, I am so sorry to hear this latest news... I'm not going through anything similar. but just wanted you to know that I (and I'm sure everyone else on this site), will be rooting for you....
Re tips on cough remedies... Just some obvious things... It helps to walk around if you can, and keep as upright as you can, whether you're standing or sitting. When you were in hospital, a physiotherapist might have given you help re breathing exercises, but if not, you might find the following helpful. It would be good to discuss them with your doctor or a physiotherapist first.
P.S. The links above are to a site to help people with "primary immune deficiencies" (PIDs). But as CLL patients are also immune deficient, a lot of the advice in dealing with infections is relevant to us as well.
I feel for you at the moment an awful chapter in your life, all I can say is keep strong and fighting and you will get through this. My thoughts are with you
Jan - I am so sorry to read this as well. It sounds like you and your doctor have a good plan in place. Lots of positive thoughts and a big hug being sent your way.
Last year I was in hospital for two months with a bad chest infection. The cough was the worst thing and it got to a point where I had to have morphine so I could get to sleep at night. The doctors were waiting for me to get better before starting me on new medication for CLL but eventually I was so weak they gave me ofatumumab. For me this was a miracle drug! The chest infection and cough cleared up almost immediately. I am now on Ibrutinib and feel better than I have for several years.
Keep going Janet. There are so many new drugs out there for CLL. The problem is finding the right one for you and it is encouraging that CLL treatment is becoming more and more individually orientated.
Hi Jan, my husband (also in his 40s) will be having a transplant in May. He has been on Ibrutinib for 10 months (first line treatment as he has 17p deletion). Fortunately he has a donor who is a match. Although the stem cell seems drastic, his specialists claim it is the best option for young people with poor prognostic indicators. Are you also 17p deleted? If you like I can keep you posted on how the stem cell transplant goes. All the best.
All the best Jan. My husband was in Christies for testicular cancer in the early 80s. I was so impressed with the caring and efficient staff. You are being treated in one of the best cancer hospitals in the world, so I am sure you will get the best care. Your positive attitude will get you through this and you will be off the floor and running soon.
So sorry to read your post, Stay positive. The best advice given to me when my husband was going through a very bad time was to take it one day at a time.
All best wishes to you. i am not on here very much at the moment due to husband having another bad patch (not Richters i am hoping). But i will be thinking of you.
I wish I had some useful advice to offer. Instead, please just know that you are admired from across the globe. Your spirit is inspirational...'Keep trucking Peeps' is bloody terrific. Sending you all the best vibes the airways can possibly carry Jan. What gal. xxx
Hi Jan, Unfortunately I cannot offer anything in the way of practical advice, but just wanted to join everyone else in wishing you all the best. I do believe that the right attitude is worth just as much as any medical intervention. In that case, you are certain to win this new battle against Richters. Sending hugs and love your way. xoxo
Hang in there kid. You have only one way to go and that is forward. May you ride to complete recovery on the many healing thoughts coming your way.
Regarding chemo induced coughing: I had a good friend undergoing multiple chemo based therapies for metastatic prostate cancer in his 5-6 year battle. He swore by cannabis for maintaining appetite, cough suppression and reduction of anxiety. Please note that this is a patient with a different cancer and chemo regimen than yours so must be viewed as highly anecdotal if not illegal in many locations. People react differently to pot and pot varies greatly in strength. He had prior experience with pot as a casual recreational user so for someone who has never used cannabis it might be a source of stress in and of itself. Anything you might use to alleviate coughing has potential to interact with your therapy drugs so run any suggestions by your Onc.
Like everyone I am upset for you and I wish you strengh for your battle. I sympathise about feeling old and hate the colds and coughs.I shall be sending you my strengh with my thoughts.
Be strong and know even if we haven't met, we are here for you and your thoughts!
Jan, sorry to hear your news, cannot help with any advice as recently diagnosed but wanted to send virtual hugs and to say stay strong , your online family are here whenever you want to talk, need advice or a good old rant, these people are wonderful, lv julia
Jan, I'm very sorry to hear of your devastating news and that you're now dealing with the fatiguing aftermath of a chest infection from your first treatment. You've got plenty of support from our community which I'm sure extends far beyond those that have replied. Your young age for a CLL diagnosis will now be of benefit to you, giving you a greater chance of a good outcome from that transplant which we wish will hopefully also cure you of both CLL and Richters.
I admire your positive spirit in trying times; hang in there.
I admire your courage and wish you the very best. My husband has had several bouts of chest/lung issues. At times he has had to use strong codeine-based cough syrup to get any sleep. Thankfully only needed it a few nights, but we were glad to have it.
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Richter Transformation - Update
Richters Transformation
