Feeling abit desperate

Hi, I am a 58 yr old from UK. I was diagnosed 3 1/2yrs ago and have been W/W since then. Last October my lymph nodes in neck got enlarged and have got progressively larger since then. I have had CT scan to prove this and my consultant who is on research board for Haematology has suggested I apply for FLAIR trial. I am scared to death after reading information sent to me from research nurses, I appreciate that they have to tell you about every side effect but they sound awful. I am also scared of the bone marrow sample (did I mention I am just a wimp!) I have read horror stories. This community has saved me to a certain degree, I felt totally alone but have learnt so much from you all for which I say thanks! My consultant has agreed to monitor me for a further three months and in that time I intend to get fit and healthy as I think the fitter you are the more able to deal with the side effects. But then I start thinking should I go ahead as soon as I can in case my lymph nodes get bigger.

I would welcome any comments please.

Sally

31 Replies

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  • Hi Sally,

    I think as treatment time creeps closer it must create such greater fears and anxiety. It's totally normal and your emotions are totally normal too. I've not had a BMB but I'm sure you've read the posts from others on here who have and in the main, the fear is greater than the reality.

    I'm coming up to 5 years diagnosed and like you, I probably hoped the treatment need would never loom. A possibility of a place on the FLAIR trial is incredibly fortunate but was never on your wish list I'm sure! Possible side effects for everything we take or do have to be revealed now but I try to take the view, 'their story is not my story'. I also take the view that whatever is thrown at me, I'll somehow draw the inner reserves of strength from somewhere to cope with it. It's just amazing how we do.

    You have a few months to strengthen yourself physically and prepare yourself psychologically. I know you'll also be self monitoring the lymph nodes and will know if earlier intervention is needed. Clearly your Consultant feels that it's ok to wait a further three months and I hope you have a trusting relationship with him.

    Wishing you all the best Sally. There's a wealth of shared experience on here supporting you so just reach out as necessary. Keep us informed.

    Best wishes,

    Newdawn

  • Thank you Newdawn for such a quick reply. I will monitor my lymph nodes and take advice from my consultant. I appreciate that every person is different but I still read everything and take it all in. I don't know what I would do if I didn't have this site as I don't know anyone elsewith CLL. But on with getting fit and ready to cope with whatever happens.

    Best wishes

    Sally

  • Hi Sally. It's only natural that you are feeling anxious. Even though a place on the FLAIR trial would be great, it's still a frightening thought.

    I have no experience to draw on but from what I read, everyone reacts differently and no two experiences are the same (a bit like having a baby!)

    Draw on the strength and advice from all the people here who do know how you feel. We are lucky to have each other at these times.

    Let us know how it goes.

    Peggy

  • Thanks Peggy it's so helpful to read about people in the same situation and to be able to learn from them. I will keep you posted.

    Best wishes

    Sally

  • Hi Sally,

    In May last year, I had half my thyroid out, from June, I started 6 rounds of FCR.

    You're qualifying what's important to you by asking questions to this lovely group. Once you feel comfortable understanding what you need to know and what you can leave, you'll feel much calmer.

    Treatment does present challenges but I feel so much better than I did this time last year. Some people breeze through it, some of us don't. Whatever way it works out for you, you'll have the support of this group behind you.

    All the best.

    Nic

  • So, you did finish your FCR? How was the resulz after the treatment? feeling better? Blood results normal with CR?

  • Hi Seoul,

    Yep all done and finished. Got complete remission which I am over the moon about.

    I feel loads better.

    Otherwise busy getting on with life again.

    I saw your post, your results look great!

    Well worth it. FCR does a flipping good job for some of us.

    Nic

  • So reassuring niccynoonoo for people facing FCR.xx

  • Hope, your CR will last forever😀😏

  • Thanks Seoul...yours too!

  • So, my Cll count in MRD test is 0,1,0,3,,0,1,,0,3and now again back to 0,2!!

    Looks like, it is staying there more or less since two years!

    I am happy with that!

  • Sally

    I was diagnosed with SLL last year at the age of 55. The swollen nodes in my neck were huge and I started treatment in the FEB I was on the FLAIR trial and got FCR for 6 months.

    The information is terrifying. I went into Maggies centre and read it through with them. From that I ended up with a list of questions that I emailed to my consultant. The research nurse also made herself available and no question was too silly.

    I am the wimpiest wimp you could ever meet. The bone marrow was not comfortable but was bearable.

    Everyone seems to have different experiences with treatment. I can only comment on the FCR but not ibutrinib. FCR had its moments but I am now in remission and have a normal looking neck. I wouldn't worry about the nodes getting worse. Your consultant is fine waiting. It's amazing how quickly they go down when treatment starts.

    You will find that you will amaze yourself at your ability to get through this. And the result at the end was definitely worth it.

    Mags

  • Hi Mags

    Thanks for your reply. I can't believe how much better I feel reading all your comments on here. I have a lovely Nurse who gave me her number to contact her anytime, so I think I will write down some questions and give her a call. To have so many caring people who take the time to read my fears and reassure me is a blessing and I can't thank everybody enough. I was feeling pretty isolated as nobody seemed to have much knowledge on CLL, including myself.

    Best wishes and wonderful you are in remission.

    Sally

  • Hi Sally .

    And welcome .

    I have been on Ibrutinib for 21months now and yes I have had and still get at times a few side effects but nothing that can't be dealt with once I get my head round it .

    When I first started Ibrutinib I was frightened just like you but having the lovely people here that I could ask questions and share my fears helped me enormously.

    You may not experience any side effects at all .Not everyone does remember .

    As regards to the BMB when I had mine the doctor and nurse were lovely,very caring .The nurse chatted to me all the way through and all I felt was a tighting .The dr told me when he was going deeper and not to worry that it could be a bit uncomfortable.Honestly it wasn't too bad and was all over in no time at all ..Yours will be the same I'm sure .

    Just think Sally how lucky we are to be able to have all these amazing treatments these days unlike the pot people that went before us .

    Take care and keep intouch .Ask any questions and share any fears you have here .What do they say a worry shared is a worry halved .How true is that .

    Hope you get this as the Internet at the moment here is a bit hit and miss as it were

    Brenda☺️

  • Hi Brenda

    Thank you, you have made me feel so much better. It helps to read about you all who have been through a similar experience. I don't feel half has bad now especially re the BMB which I must admit was really worrying me. Good luck with your ongoing treatment.

    Best wishes

    Sally

  • Hi Sally, I am on the flair trial, ibrutinib arm, started in July 15, some niggling side effects but manageable, am currently in remission and due to see haematologist tomorrow for latest results, have had two bmbs the second one worse than the first, I think it depends how experienced the person doing the collection is, pain easily managed with paracetamol, hope if/when you have treatment it all goes well, best wishes, Terry

  • I don't live in the UK and have little knowledge of Flair other than what I have read on this website, but the over-riding impression I have got is that you are very well monitored when participating on trials. That is a big plus.

    As far as FCR goes, I, like BellaBee10, completed the whole six cycles in November 2016 and I too, feel much better now. FCR was not a 'walk in the park' but it was bearable and already the results are worth it.

    So don't be afraid. There are enough of us here, young (BellaBee) and a good deal older (me!) who have coped with FCR and are now reaping the benefits.

    All the best,

    Chinchilla

    ps I'm also a terrible wimp !

  • Thanks Chinchilla it's the fear of the unexpected that makes me a wimp. I feel much better now after all your replies.

    Best wishes

    Sally

  • Sally

    All drugs have potential side effects even aspirin but not everyone gets them.

    I had several side effects with FCR and was hospitalised on three occasions because of them. BUT the rub is I am now in remission living a normal life playing loads of golf, going on numerous holidays and enjoying friends and family.

    It's natural that we worry about the unknown and how we will react to the cocktail of drugs we are given.

    My advice (wimp or no) is look forward to the end result , accept that for a period of time you will be in treatment then make plans for the NEW you!

    It is likely that at sometime I will be back in treatment but If so we will go through it looking forward to the next stage and plan for that too.

    All the Best

    Geoff

  • Thanks Geoff great that you are in remission. I did hear that you can only have six courses of FCR so what is the situation if you need more treatment in future.

    Best wishes

    Sally

  • Hi Sally, I can't add much to what has already been said other than to endorse it. You only have 6 FCR courses for any one treatment plan but, if you respond well and there are many years between your treatment and future relapse then patients do sometimes get the same treatment again and do well. Hopefully though, there will be many more less toxic treatments available by then.

    My only other comment would be that FLAIR will most likely close to new patients later this year as it has been very popular and will have reached its recruitment target. I'm on Ibrutinib and yes, there are side effects but it feels like a wonder drug. Also, please don't wait until you feel ill to start treatment. It's much better to go into it feeling well and fit - you're better able to cope with any side effects that you get.

    Regarding the bone marrow, I have had two now and I am such a baby that I always ask for something like diazapam to take beforehand and afterwards I wonder what I was worrying about!

    Best of luck with whatever you decide x

  • Thank you for your reply I feel so much better now and reading everything so not so ignorant. I will ring my nurse and ask some questions then ready to face it. Good luck to everyone in their daily experience with CLL. I don't feel half so isolated now I have met all you lovely people.

    Best wishes

    Sally

  • The normal treatment is six rounds of FCR (I only had three before nuets didn't recover) but a second round of treatment can be possible with FCR if it is deemed suitable.

    However, with the current new non chemo drugs there is an opportunity to choose and chemo treatments do affect all bloods and the whole body so non chemo treatments are preferable in many cases. It is true to say,however, that these new drugs also have side effects. If you take time to read up on them there are known side effects from trials and in the case of ibrutinib,for example, new side effects are being found as more patients are using the drugs. A recent post on here cited a cough and throat catarrh as a side effect that is common for ibrutinib that was not found in trials. Atrial fibrillation is also common as is the possibility of a bleed. Venetoclax also has side effects so as I said before all drugs have potential side effects,although not everyone suffers from them.

    It's the end results that matter so the trade off is remission against side effects.

    I have been told that if required treatment will be ibrutinib,however, I will have to make the same decision and weigh up all the pro and cons and the choices of treatments at that time if it arises.

    This will be done with my consultant and I will make the decision as before.

    Wishing you well

    Geoff

  • And one more... I am aged 59, on the Flair trial (Royal Bournemouth) and finished FCR last August. My swollen nodes vanished after Round 1. The chemo drugs made me feel nauseous. Managing that was a challenge which was solved in time for Round 3 - assume you'll feel nauseous and take the drugs before you feel sick! The important thing is to trust the medical team have your best interests at heart and know what they are doing.

    Both BMBs were quick and painless, during and after. I took paracetamol for one day afterwards just in case. Root canal dentistry is far worse... :-)

    Oh, and so far, FCR works for me. MRD negative result. I feel fine and we're just waiting for my immune system to get back to normal levels before I stop the antivirals.

    Good luck!

  • Hello there,I have just completed 6 months

    At Bournemouth Hospital on the Flair trial too the IR Arm

    They are wonderful there

    Glad all is well with you👍

  • Hello there,

    I am 53 and I have just completed 6 months on the flair Trial, with the most amazing results indeed! ( still on the trial)

    When you read the list of side effects that you

    Could experience ,it does seem daunting!

    I have only experienced some initial bone pain

    But apart from that, nothing.

    The bone marrow biopsy is uncomfortable

    I have had two now, but not as bad as I antisipated! And over very quickly👍

    No problem really!

    The whole experience has been fine!

    So I wish you well and go for it

    I'm sure you will have great results too.... regards

    Kelly

    I

  • I have done 2 bone marrow's and it's not too bad. You could self medicate with a couple drinks before it. Seriously. I'm going to do that for my next one.

    Do you know your genetics? If you are 17 P deleted then the FCR side would be bad. If you are on mutated FCR does not work as great as if you were mutated.

    I am on ibruvica for the last month and it has not been too bad. I am 53 and 17p deleted.

    I am on a clinical trial which combines IB and then venteclax.

    The IB has been great I had huge nose in my neck and other areas and they went down in a week!!

    Since you are young and treatment naïve I personally feel it's much better to be on IB than FCR in the long run.

    Just published at the recent American Society of hematology conference is data out of Ohio State showing the initial treatment naïve patients are almost all doing very well on IB 6 years later. They started with 31 patients one progressed at 11 months and all the rest have never progressed in their disease. A couple had to go off for other reasons.

    Be well

  • I had two BMBs with my very experienced consultant (now retired) - no problem at all, discomfort rather than pain describes it.

    I suspect that, if the consultant is competent and confident, and if the patient is (fairly) relaxed, there should be no problem. Definitely no worse than a visit to the dentist - in fact, rather better!

  • I have had one BMB, and it was painless for me. My doctor does a good number of them, so maybe that helped. She also uses a lot of local anesthesia to make sure that it is as painless as possible. She told me that the next day I would feel like somebody body slammed me in the hip, but I didn't even have pain the next day. I can't remember if I took any Advil just in case, but I don't think I did.

  • Sally, I am Stage 0 and on watch and wait. I understandyour anxiety about the whole process and will keep you in my thoughts and prayers.

  • Thank you so much. I have an appointment in March 23rd which is getting closer.

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