Hi, l have decided to present my very first post to this forum because i think it is time to put something back for all the help and advise i have taken from it on a daily basis for the last 3 years. I was diagnosed at 59 with CLL.
I had two and a half years of watch and wait during which time I regularly had bouts of head colds and sinus problems, I was admitted to hospital with sepsis during this time but recovered and a couple of months later started treatment on the FLAIR trial at Nottingham City Hospital. I was quite worried at this time as to what treatment i was going to get and when I discovered it was FCL I felt more concerned so turned to this forum for information as to what i was letting myself in for. I’d got bone marrow biopsy’s, CT scans and Chemo all giving me the creeps, and giving me sleepless nights as to how painful and how my body would react to the medication.
Well my first bone marrow biopsy was less painful than an injection at the dentist, the CT scan they injected some dye into me and was no bother at all. Then I had my first of 6 lots of chemo over two days. The nurses were fantastic. There was no adverse reaction to the drugs and so over the next 5 months I sailed through the treatment and finished it with ease. During all that time I felt only slightly ‘off it’ for the first week. I continued to play golf twice weekly, and missed only one squash night a month. The second bone marrow biopsy was no problem whatsoever (different doctor) and the CT scan easy. Honestly some of the blood tests were more painful.
Like I said I turned to this forum for reassurance during each stage of my treatment and it helped me prepare myself for what I was to endure.
I just want you people who are about to start the same journey to be assured that sometimes things are not half as bad as one imagines them to be. I know there are people out there who have had an awful reaction to the whole treatment process, but the fact that I have sailed through it without any problems whatsoever should help to provide reassurance that it could be the same for you.
Well thats it I’m done, oh , and my results were very good all my bloods are back to normal.
How good is that?
My thanks go to everyone who saw me at the Nottingham City Hospital and of course to each and everyone on this forum who gave me the advise and courage to go through with it.
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Great news. I am on the Flair trial too on the Ibrutinib and rituximab arm almost 5 months in.
I completed the rituximab last week without any problems and have only had minor manageable and temporary side effects with the Ibrutinib. My bloods are great now.
It is so important in my view that people hear about those in treatment who have had positive experiences as well as negative. I experienced a lot of anticipatory anxiety after being told i needed treatment which thank goodness in my case turned out to be unnecessary so far.
Thank you so much for this post, it's very reassuringto hear that FCR was a positive experience with very few side effects and excellent results.
I am still on W&W but nearing treatment and hope to participate in the FLAIR trial. I have been very worried about getting the FCR arm as the side effects can be awful however you have given me some hope.
I am so pleased that it's been a successful experience for you. I pray that you enjoy good health for a very long time and that you relish your "new " life and live it to the full. 😃
Having very positive experience with FCR so far. After each of my 2 treatments, I rest for 2 days.... slightly tired then rest of 3-4 weeks in between, back to my regular life. Hopefully stopping after my third. Not everyone needs all 6 cycles.
Thank you so much for sharing your uplifting story. It brightens my day to know that these experiences are also possible. I appreciate you, and thanks again for posting.
I think that the longest five minutes of my life were the five minutes sitting in an infusion center chair waiting for my first treatment to start. My treatment was not anything standard, because my CLL is not typical, but I also had an easy time dealing with it.
Thank you for sharing your story! It is so helpful for those who are new to read about the good, as well as the bad and the ugly. Unfortunately, for readers in groups like this, most of the people who sail through treatment and do well are too busy out living life to need this type of group. Something important to remember!
Sharing your story truly does help others, it’s why I got into the arts and photography. If one story can help someone who I may never meet it’s all worth it. You may be helping someone too shy to even reply but your story matters and relates.
The timing of your post could not be better. After 16 years of W & W I will be starting treatment at the end of the month. As I wait to find out the results of a FISH panel and which treatment plan the Drs have in mind, your message was most reassuring. So thank you and wishing you continued good health.
Its great to hear that you had a smooth ride through chemo. My experience was on the other side of the spectrum. The first month went very well, but things went down hill from there and after the fourth month I ended up in the hospital for a week with counts so low that they gave me daily blood, platelets and a few IVIG's. My dotor said that I had a rare reaction to FCR and that I could never get that treatment again. Thankfully it did it's job and I am now in remission with incomplete recovery. My blood counts are taking forever to come up and my doctor says that they may never fully recover. Now I'm getting monthly IVIG's which may go on for the rest of my life. I do feel very fortunate to be in remission, but it was a wild ride getting here. Hopefully this remission lasts for a while. It's time for us all to live life to the fullest! Let's hope for a long remission for everyone...
Chris, sorry to hear about your rough ride through treatment. I know that I am one of the very lucky ones. Good luck to you for the future and yes we should all make the most of it.
What a lovely optimistic post! I found my first bone marrow aspiration pretty horrific but maybe the next one won’t be! Your story helps me feel a little less fearful. I’m hoping you have a long long long (permanent) remission!
My husband's bone marrow biopsy was horrible as well......so painful. Second one, he received conscious sedation.....so much easier and not painful for him.
It sounds like you are faring well. I was diagnosed three years ago and have still not needed to have chemo. I had a CT scan last year to identify a lymph node swelling.
When you had yours, did they inject the dye into you? That was a really weird experience.
Thanks for sharing. I really have no idea what lies ahead and am interested in hearing other folks' experiences.
Yes they did inject a dye into me both times, they said it might give me a metalic taste in my mouth and make me feel like i want to pee, but to be honest i didn’t feel either sensations
They told me it would create a sensation of warmth on the side of my body they injected it in. It did. It was pretty weird, but the tech informed of this ahead of time. He was great.
I think I would have freaked out if he had not told me. Excellent staff at this facility.
I am so happy to read this account of your treatment. I am set to start FCG in a month and hope my experience goes as smoothly as yours. I had a BMB in June and left wondering what all the fuss was about. Of course I know they don't always go so smoothly and credit the wonderful physician who performed the procedure. I have to do it again in 2 weeks and I'm not nearly as fearful this time as the first go around.
I have been eating well and keeping up with daily exercising so that I can go into treatment at my strongest. I plan to post my experience here as well. It gives me comfort to hear a such a positive outcome this close to the beginning of my own journey. Thank you!!
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