Is there anything that can be done if lumps in neck remain after 6 cycles of FCR treatment?

[yorkie19]

Due to have 5th cycle of FCR treatment next week and although lumps in neck are much reduced they are still significant in size : two of them about 2.5cm across, one on each side under the jaw line. Saw consultant yesterday and he agrees it is unlikely that the lumps will disappear even after the 6th treatment. He is now thinking that complete remission is unlikely but will know more following bone marrow test after the 6th and final treatment. The consultant is effectively saying that after the 6 cycles of treatment I will just go back to watch and wait even if the lumps are still there. Can anybody give any advice on this? My white blood counts have never been much more than 40 : always been told they are "stable" but treatment was commenced due to my being very badly affected by fatigue and due to the very large lumps in my neck. I came away from my appointment with the consultant yesterday very very disappointed.

[zentangle]

Hi yorkie19,

I don't profess to have any specialist knowledge. However, I thought I would ask if you had a FISH test prior to your chemo to ascertain what type of treatment you should be having? (Forgive me if you have mentioned this in previous posts). Without knowing whether you have (and its outcomes) it's difficult to say anything. I am on Watch and Wait and so can offer no anecdotal help either, although I am sure there are many on here who will be able to.

Wishing you well

zentangle

[yorkie19 in reply to zentangle]

I do not know what a FISH test is! As fas as I know the FCR treatment (selected by my haematology consultant at Colchester General Hospital, Essex, England) that I am undergoing is a standard first treatment for CLL . So far I have felt confident in leaving matters to my consultant and have not tried to do any in depth research of my own.

[Cllcanada Top Poster CURE Hero]

If you are in the U.S. you might discuss a follow-up treatment with Imbruvica (ibrutinib). It is very successful at shrinking nodes. Unfortunately it is not available yet in the UK or Europe...

However FCR is cumulative, you may find a change after your last two rounds. It is not uncommon to do more rounds if there is benefit to the patient...

~chris

[yorkie19 in reply to Cllcanada]

I am based in Essex, England and Ibrutinib will not be available to me under my NHS treatment. My consultant shares my concern that I will still have some lumps in my neck after the 6th treatment cycle. I did ask if a 7th treatment cycle was an option but his response was effectively negative saying that I would go back to watch and wait after the 6th treatment. My treatment was delayed to see if I could get on an Ibrutinib trial (Flair?) but the trial kept being delayed and I could not wait any longer. With the benefit of hindsight I think I should have started treatment much earlier before the lumps got so big (felt like they were strangling me) and my fatigue was terrible. Having blood test Tuesday next week to check if I can proceed with 5th cycle of FCR treatment : consultant said treatment may be delayed as my WBC has not recovered enough after the 4th treatment. Many thanks for your reply.

[Newdawn Administrator in reply to yorkie19]

Hi Yorkie, you're in a frustrating position and I can appreciate your concerns because you'd obviously thought starting the FCR before the lab numbers were saying it seemed necessary would iradicate that serious problem for you. And I'd feel the same about being told to go back onto W&W without the presenting problem of the neck lumps being resolved. This is compounded by your WBC not recovering sufficiently well for the cycles to

steam ahead as it were.

I'm not an expert but I'm thinking about what I'd do in your position. Of course you trust your Consultant's advice and have left it to him to guide you on treatment options. But in honesty Yorkie I'd be asking for a second 'expert CLL' opinion to look at other options. I'm not saying there are any quick fixes but I'd be wanting to explore the possibilities anyway. A good consultant should be prepared to share the problem and I think you may need to be proactive about this. This is so important to you after all.

This is a good explanation of what all the tests are and FISH is explained. The reason FISH is important is because it's a good guide as to whether FCR is the right option dependent on our unique chromosomal/DNA presentation etc. - it may be that's it's been undertaken and you're not aware. It's often undertaken prior to treatment in order to 'tailor' best approach and assess the possibility of success. It's taken from an American site but I've found it easy to use and understand.

cancer.org/cancer/leukemia-...

I sense that you'd be deeply unhappy finishing your FCR being left in this position and I'm not sure you're getting the depth of answer you need at the moment from the medics. It is deeply frustrating that Ibrutinib isn't available to you and I don't pretend to know if there are other interventions in combination with your FCR that might help but in your position, I'd be pushing to know. However, as Chris says, as the FCR cycles continue, the nodes may shrink with the cumulative effect and I hope that is the case for you. Good luck!

Newdawn

[zentangle]

Hi Yorkie, Contrary to what has been said on here, there is at least one British poster on here who has been offered Ibrutinib. I will try to find it, if you would like me to. An application to use it in the UK as second line therapy has been made. I think you need to ask why the consultant wanted you to go on the Flair trial because it sounds to me like s/he had doubts about FCR, possibly caused by your FISH test.

Regards

zentangle

[Newdawn Administrator in reply to zentangle]

Zentangle, this may be the post you are referring to;-

Taken from this thread;

healthunlocked.com/cllsuppo...

25 days ago lee123

'Hi,your doctor is wrong to my understanding Ibrutinib is already being used in the UK.I know because my consultant said he's acquired Ibrutinib on my behalf,should my current treatment with Ofatumumab fail.I"m not alone i'm in contact with someone else who has also been offered Ibrutinib should their current treatment fail.I wish you luck in your quest.Regards Lee'

Newdawn

[zentangle in reply to Newdawn]

Thanks, Newdawn, that's it.

[Cllcanada Top Poster CURE Hero]

Steve, do you have a link on Ibrutinib approval by NICE? I can find nothing....

ukmi.nhs.uk/applications/nd...

Thanks

Perhaps you are referring to this from Hairbear?

healthunlocked.com/cllsuppo...

'It was announced last month that while we await European licences for Ibrutinib/Imbruvica. Treating consultants can gain access using an expanded access/compassionate use program on a named basis until September, this is only available for treating patients who will not respond to available treatments and have run out of options , those in Wales may have difficulty gaining access.'

[zentangle]

Sorry Chris, that first link is what I understood to be NICE approval. However, it's an application isn't it?

Regards

Steve

zentangle

[Cllcanada Top Poster CURE Hero in reply to zentangle]

That is a synopsis....... it says 'UK:Pre-registration (Filed) ' So it is in the works...

When it is approved, it will be major news, I can assure you...

[zentangle in reply to Cllcanada]

Not least of all, for me!

[Cllcanada Top Poster CURE Hero]

Here is the IDELA (idelalisib) synopsis... a really useful tool these listings...!

ukmi.nhs.uk/applications/nd...

[Phillysteve]

Your response to FCR is very similar to my response to PCR. I also had nodes that did not shrink completely, after 3 months of my last treatment I had another bone marrow biopsy. It showed I still had CLL/SLL >20% with prolymphocyes and fibrosis, etc. My fatigue continued and I was started on imbruvica a few weeks ago which should help with the 17p deletion I have. Some of my nodes have shrunk, some unchanged, some got larger. The fatigue continues and unfortunately I am out on short term disability. Hope you will have better results after your last FCR treatment!

[keepfit123]

The thought occurred to me as to when you call somebody 17p deleted /p53 . Is it 5%, 10%, 15%, 20%, 30% and for which of these values is FCR not a good option?

[Corin850]

Twice I have had operations to remove lumps from my neck, which didn't grow back. Could you do this?

[Lola69]

HI! Sounds like u have SLL. Have you tried imbruvuca?? They shrink nodes very well