Life after fcr...what can we expect?

[Bethan49]

Right guys, I have been chatting to our mad friend @Bellabee and we have been wonderinga few things as we are heading toward the end of our chemo.. nic due to do round 6 and me round 5...

So at the end of this round what are the best possible outcomes that we can expect. What measures should we be asking for to check? What questions should we be asking?

On another note, what should we expect in the following year? How will we feel physically after chemo? Should we be monitoring anything specific? When can we travel? When can we return to work? How often should we be monitored? ...

What side effects of FCR may we have long term?

Nic asked me to do this as she is busy writing a post about wind. .. She's had me crying with laughter....

This little character is called Windy Miller.. From a children's BBC programme from the 60s... just for Nic !!!!

Hey! We're nearly there... Thanks for all your support x we can do this!

[BellaBee10]

You're going to have more to worry about than CLL or FCR after effects Bethan49

[Bethan49 in reply to BellaBee10]

You love me!!!!

[Bethan49]

Nah..doubt it!!!!

[teakbank12]

I'm just finishing FCR round six.

I have an appointment with the Mac nurses called a holistic meeting where we can ask questions etc, have been given a booklet too.

Dave

[BellaBee10 in reply to teakbank12]

Who are Mac nurses?

Hope you're well Dave.

[teakbank12 in reply to BellaBee10]

MacMillan cancer nurse specialists.

I have my appointment on 11.11.16.

Has anyine suffered from a cramping type pain when walking the shortest of distance, it's in my left ankle.

Dave

[Bethan49 in reply to teakbank12]

Dave..congrats on nearly finishung. Delighted for you.

If you have any questions that you think we should ask please let us know. . X

[Newdawn Administrator]

It's going to be Absolutely Fabulous darlings with you both getting a new lease of life. So watch out world! (wind indeed!

Hopefully others will give a sensible answer on practicalities. It's coming to a place near me soon but for now I'm madly dodging it for as long as possible!

Warm regards,

Newdawn

[London_Girl]

I wish I could tell you but I don't know. I'm just jumping on your fun bus...what's this about wind ???😂

Seriously though, I was wondering too as my hubby is due to start treatment soon 🤔

Maria xxx

[BellaBee10 in reply to London_Girl]

It was my dog.

[wroxham-gb in reply to BellaBee10]

How dare you blame her!!

[BellaBee10 in reply to London_Girl]

Seriously, hope you're both doing ok? Do you have a start date yet?

Xxx

[London_Girl in reply to BellaBee10]

No...waiting for 'the phone call' to tell us which arm. We are both surprisingly easy with either as I have read so much good stuff for both. I think we are just glad we have good options.

Off to Spain for a long weekend tomorrow, we are leaving CLL at home ! ..well apart from me being totally neurotic at Gatwick if anyone even dares to sneeze near my hubs !

Glad you girldls are coming to the end of your treatment. I will e calling the troops in soon no doubt

😘😘😘

[BellaBee10 in reply to London_Girl]

Have a lovely time in Spain. You both deserve it. Speak soon Maria xxx

[Cllcanada Top Poster CURE Hero]

Bethan49

Medically you should ask about the depth of remission... the best is MRD negative. This can be run at any time on a bone marrow biopsy or you need to wait 3 months post FCR to have the test run on blood... both are OK, but BMB is somewhat better and if you are MRD- then consider a total treatment success...

You will be back at stage 0 after treatment, but you still need to be careful about infections... your CD4 T cells have been suppressed by FCR...

Also be mindful of what you eat, and where you eat, and cross contamination in the kitchen...

There is a rare situation called late onset neutropenia, caused by Rituxan, and it can happen even 6 months post treatment. Stay really well hydrated the Rituxan can hang aroung working for quite some time...

Caution is the key... skip the deli and cold cuts, salad bars and buffets etc... anywhere foods has been held... for some time, either hot or cold...

Just enjoy life...with a watchful eye... 👁

~chris

[Bethan49 in reply to Cllcanada]

Chris this is just so helpful. For me I have 2 more to go but the light is at the end of the tunnel BUT I really need to ask the right questions to know all this has worked.

I had a ct scan on Sunday for half way monitoring.. Will get restults at next appt.. what would you expect to see after 4 rounds? Does a ct scan also act as a goid benchmark to response?

Take care . Beth x

[Cllcanada Top Poster CURE Hero in reply to Bethan49]

Hi Beth.... yes a CTscan will tell your doctor the current node involvement... very likely your nodes and spleen will be close to normal size...

While I mentioned MRD, there are other responses in CLL, but these are assessments by your doctor, based on observation , like using a scan, and combined with blood counts and other factors.

You can find a discussion of complete and partial and stable diseases in the iwCLL guideline below...

bloodjournal.org/content/bl...

MRD negativity is the goal, but it can be hard to achieve, I just posted an article about it today... it is still a work in progress as a clinical trial end point and is yet to be broadly used outside U.S. research hospitals.

You can ask about it, but don't be too upset if the test is not available to you...

~chris

[Bethan49 in reply to Cllcanada]

Thanks...Really helpful but also trying to keep a grip on reality and pray for a long healthy remission without getting to hung up on specifics... If you know what I mean .

[Cllcanada Top Poster CURE Hero in reply to Bethan49]

My remission on FR was 3 weeks... so they vary...😝 Complete, partical and stable are just fine too...

[L_MP8]

Hello to you both,

I am at roughly the same stage as you both in FCR treatment. Regarding your question about returning to work, I was summoned to attend a sickness review meeting at work (I am employed by the NHS and currently signed off sick) a couple of weeks ago "to keep in touch and have a plan for my return". Being in the middle of this merry-go-round I did not have a clue when I would be able to return as I don't know what life is like beyond week 4 as I go back to week 1 again!!! and I must confess I was slightly affronted that I had to attend the meeting at all (apparently such meetings are considered good practice) I contacted the haematology specialist nurse for guidance to prepare for the meeting. She was very supportive and advised me to state that my treatment plan was 6 cycles, I need 4 weeks recovery time from last chemo cycle and a further 6 weeks recovery before returning to work on a phased return. She assured me this was quite normal (especially the phased return) This is just a guide and obviously can be tweaked to each individual. I have had a 2 1/2 week delay waiting for a CT scan before commencing cycle 5 and I am noticing that I am starting to feel more human, so think the guidance is realistic.

Best wishes

Lucy

[BellaBee10 in reply to L_MP8]

Hi Lucy,

I need to have that chat soon so this is really helpful. I went back to work at the start and was repeating myself in meetings and forgetting stuff. I think they were relieved when I took time out.

I should be in for my last round on Monday. I've had a stonking virus and had a temp up to 39.5 but it's going down. I sound like Barry White today. Hopefully I'll be good to go by Monday.

How have you found it so far? I bet having a glimmer of feeling better beyond week 4 was good.

Best wishes to you.

Nic

[L_MP8 in reply to BellaBee10]

Hi Nic

My consultant and GP were convinced I would sail through FCR because of my age, oh how wrong they were!!! Each cycle seems to take a bit longer to get over than the last. Reading yours and Bethan's posts really helped as there is very little reported on here about FCR being hard for some of us!

Just planning to make the most of my 'well' days until cycle 4 on Tuesday!

Hope all goes well for you on Monday.

Lucy

[Bethan49 in reply to L_MP8]

Good luck ..Keep us posted on your progress xx