Only 9 months into diagnosis and W&W, it looks like chemo is about to begin. Symptoms have recently become more problematic with huge nodes in neck restricting my movement, groiin very sore and abdomen tender ion right side. Energy levels have dropped dramatically. Scan shows enlargement of all nodes.
This is a blow as was hoping for a good few years of W&W.
A bone marrow biopsy is booked followed by meeting a week later. Been given fcr info....so it begins...
Part of me is relieved as I feel pretty rotten but there is the fear of the unknown.
Any advice about anything please share!!!!
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Bethan49
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you must be reeling from the shock that you need treatment so soon after diagnosis I well understand and sympathise wirh your fear. Your symptoms reassure you that you know you need it and FCR is the gold standard of treatments. Wish I could do more to banish the fear and trepidation for you.
Try to look on it as your chance to live without the nodes and fear and get back your health. There are so many on this site who have been where you are and I am sure will be along to reassure you.
I have had chemotherapy and it was not as bad as the fear of it.
When you need support our community will be here for you.
Hang tough and remember a small thing that this is hard too for the people who love you.
I echo Bub's lovely words and am sorry you're having to have treatment so soon after diagnosis. I know from your posts that you've been having some problems with intrusive enlarged nodes and called yourself 'fat face' in one of them. Having seen your lovely photo, we can't be having that! They need to be tackled and you need to be back to good health for yourself and your family. Chemo isn't pretty but it's spectacularly effective and I'm sending you massive best wishes as you're about to embark on it.
So many members on here can help dispel the unknown you fear with information and advice on what to expect.
Stay strong and focussed...we are all behind you on this and wishing you well.
Thank you so so much. When I look at photos I am quite taken aback at the size of my lymph nodes.. . You have been so reassuring and I can't put into words how I value the support and realism on this site. Thank you
Sorry to hear your treatment has come so soon after diagnosis but as Bubnjay1 and Newdawn have said FCR is one of the best treatments you can have. Obviously no chemotherapy would be better from your point of view but there are thousands of us who have had FCR and are here to attest to its effectiveness. Please try not to worry too much about this treatment, it has a good reputation for success and many people have had good remissions. It is also the chemo treatment where hair loss is extremely unlikely; at worst you may encounter some mild hair thinning.
I underwent FCR treatment nearly five years ago now and still going strong on watch and re-wait. You have probably already been told this but whilst on treatment try and avoid places and situations where you might be susceptible of picking up infection, like on crowded trains, airplanes, and theatres etc. Your immune system will likely be weakened by the FCR treatment; best give it all the help you can. I really wish you a trouble free experience in your treatment; take care and the very best of luck.
Hi Bethan, just remember that your consultant and his /her team will be with you every
Step of the way. Any problems tell them straight away. You'll be given a contact telephone number and advice about what to do. If you do not have one buy a thermometer, very useful.
Drink plenty of water and just be careful about what you eat. As well as what Kevin advised about mixing with people etc. ie germy places like big shops. It not for long and
Well worth doing.
I sincerely hope your treatment goes well. Just think of the long remission to come.
I am so sorry to hear you'll be starting treatment so soon.
What an amazing amount of positive feedback you've received from the gang here already!
I am new to this site, (my husband was diagnosed 3 months ago, on W&W as well) so I have no experience to offer, but please know I'll be waiting to hear of your good results!
Frightening times when 'it' catches up with you especially so soon after diagnosis. BUT remember how frightened you felt at the time? You got through that (with a little help from our CLL friends) and you can get through this!
The bright side is that you will feel better afterwards (although it may take a while coming) and your troublesome symptoms will be relieved.
Everyone here is rooting for you and there will be much support for all those questions you must have in your head and many to listen on the 'down' day.
Sending you all my love Bethan 49 .Stay strong .Just think in a few months you will be able to put all this behind you and be able to get on with your life .
The sun will come out tomorrow for you just you wait and see .
Sorry for your shock and I understand your fears I know I am likely months away from treatment myself. Take comfort that FCR is very successful at giving most of us long remissions and in a few short months you will be feeling well again!!!!
The unknown and the what ifs make me crazy but I have faith in my doctor and I know FCR works. It's the gold standard for a reason. Soon enough they will have a cure for this disease and chemo will be a thing of the past. I believe it will be very soon. I plan on dying of old age a very long time from now. I hope you believe the same!!!! God Bless and best wishes. Please keep us posted.
Peter
Hi. It is a shock when treatment time comes but you get on with it because it will make you feel better. Use the support available and for the first month keep a diary of symptoms to help with your next consultation. Beware constipation it can be appalling; if you go a day without opening bowels take a laxative.
FCR: Round one I was tired but carried on with a normal life but with early nights and rest. Appetite went for 3 days but I enjoyed eating to put weight back on.
Round 2 I was more lively/normal except for 2 days and eating problem whilst taking the chemo tablets at home. Also I developed an allergy to the support medicine Septrin and the advice and support from the chemo nurses was superb. Now off Septrin daily but a monthly nebulizer of Pentimide (if I have my spelling correct). Neutrophils went to 0.6 but bounced back for the next treatment.
Round 3 I feel so well except for those 2 out of 3 days whilst taking the chemo tablets. More energy because my bloods are near normal from a tumour burden of 265.
My consultant says to continue my life activities as normal and not avoid places like cinemas and theatres with lots of people. However, when I need to go to the local Medical Centre to give a blood sample I always book early morning to avoid a packed waiting room full of sick people.
I'm doing extremely well on FCR but everyone is different. Round 4 could be different for me but the trend is good. I did ask the consultant since my response was so good did I need the 6 treatments.? The reply was "Yes. The treatment would only be shortened if there were problems".
So, the support is there. Listen to your body and aim for a normal life during treatment but do not take risks, ask the chemo nurses if in doubt.
Sorry to hear you need treatment so soon, can only echo everyone else in saying fcr is not called the gold treatment for nothing, I wish you the best results and a long remission, 6 months goes by very quickly, Terry
I am sorry you are due treatment so soon but you know from your body that the time is right. I feel so much better after FCR now, still a bit tired but I can tell my body is sorting itself out now.
Anticipation was the worst part of treatment. Once I knew what was going to happen it was OK. I think staff forget this is all new to us and forget to say enough. I had to watch others to see where the toilets were and how to get me and my drip there. I would have liked more explanation about the drip procedures before my first one. Ask a lot of questions is my advice, and it won't be as bad as you think it will be. Take a good book and drinks/snacks to make the time pass more quickly.
Thank you so much for this can advice. Great to hear your feeling better too... sometime people don't have clue how hard w&w is and how rough You can feel. I will ask questions. ..thanks again x
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To continue or not....that is the question
Lymph nodes that are multiplying 
CLL FLAIR trial
Lymph nodes more prevalent in my neck
Good Numbers ...Good News
