Starting treatment

[Porthcawl]

Hi group,newbie here ,looking for help and advice for a family member, found out last dec ,starting treatment Tuesday f C R ,all in complete shock and Knw nothing at all about this ,tired to google but got a bit scared and turned off ,any help or advice would be welcome sister is age 54 x

[CguLLer]

Hi Porthcawl. I only joined here 2 weeks ago although diagnosed 2 years ago and had FCR last year. if it is any help I can honestly say that the FCR for me was not as Bad as I had feared before I started. First few rounds of treatment I felt good and not too tired. Week one treatment, week 2 a bit tired, weeks 3 and 4 felt like normal and managed to work from home during this time. By rounds 5 and 6 of the FCR I was getting more fatigued and felling sick but still nothing too bad. I think a lot depends on your sister's general health is. I was a relatively fit 58 year old.

There is a wealth of informationon here. I would say try and focus on what is relevant for you to know now and don't try and read everything or your brain will go into overdrive. There are a lot of people on here with great knowledge of CLL so I am sure if you post any questions you will get help and answers. It s not just about the facts though emotional support is equally important.

Good luck to your sister.

[Porthcawl in reply to CguLLer]

Thank you so much ,so very true about the emotional surport ,x

[AussieNeil Partner Administrator]

Porthcawl, I'm sure your sister appreciates your support and you're going to be able to do that well by tapping into the personal experiences of our members who have already been through the FCR experience. FCR is still recognised as the gold standard treatment for CLL. There are newer, non-chemo drugs, but there's only been at most about 4 years of experience with them, whereas thousands have been treated with FCR over the past 14 years. Some with the right genetics have possibly been cured of their CLL, having had long lasting remissions of over 10 years.

Here's the site search results for FCR posts:

healthunlocked.com/search/c...

There's no way of knowing how your sister will go with FCR; some sail through it and are able to keep working, others have a tougher time with it. Besides that most important emotional support, you'll find useful tips of how to minimise the effects of the treatment, in particular managing the nausea, along with what to expect and the best action to take.

Perhaps you can encourage your sister to also join when she feels up to it; you might like to search out and share some particularly relevant posts. Also be sure to check out the related and pinned posts to the right.

In closing, the great thing about FCR treatment is that it is over in 6 months; the newer non-chemo treatments are typically maintenance treatments, which can mean living with side effects indefinitely - or until better combinations are proven by trials to provide good or better results compared to FCR.

Neil

[Foggymind]

Hi Porthcawl,

Sorry to hear about your sister, but you have come to the right place for information and good advice on CLL.

Like Davidje has pointed out there is a wealth of info out there but sadly some of it can scare you silly.

I too have had the FCR chemo in 2011 and am now feeling much better than I ever thought would be possible. I had some ups and downs during my treatment and some infections during and after but people react differently and some patients will sail through treatment with little or no side effects. Your sister should be given all the facts about her treatment beforehand, do's and don'ts, what to if... that kind of thing. There is no hair loss with FCR but sometimes a little hair thinning occurs. It will probably be an anxious time for your sister but I found the chemo teams very kind and supportive and I'm sure your sister will be re-assured by their experience and understanding. Also meeting and talking with others undergoing the same treatment can be comforting. There are lots of members in this forum who are far more knowledgeable than me and I am sure any questions you or your sister have can be answered. I wish her well for the future.

Kevin - Harlow, Essex, UK

[rlyndecker]

I am currently in round 3 of FRC, I breezed through pretty much round 1 just tired but by week 3, I had more energy than I have had in YEARS & my lymph nodes had decreased dramatically, had a little trouble during round 2 (but not due to the the Chemo, just coincidentally ended up with a sinus infection).

Overall, for me because I'm not working mostly due to the stress my workplace has and the fact that it's teaching so I would be catching everything my darling students have- it's the lack of interaction with people that is the hardest for me. I'm used to going non-stop and being with the kids all day long and now I am not doing anything. All my friends of course are working and are busy so that's the hardest for me.

But as others have said everyone reacts to it differently, I was shocked at how different round 1 was from round 2. I'm nervous as I just started round 3 to see how round 3 goes. I wish your sister the best of luck and just keep being there for her!

[fieldmeadow]

I completed 6 rounds of FCR about 18 months ago. It was a little tough but I was older than your sister and had pre-existing cardiac issues as well.

Your sister will probably have the 'R' element by infusion in hospital and take the chemo tablets ('F' and 'C') home with her for the following days. Make sure she takes a bottle of water and some magazines to the ward as the infusion can take some while. Best if she does not drive herself home following the first cycle as people react differently to the 'R'. Also, make sure she calls a nurse if she has any reaction to the infusion - this is important. Most people are okay so try not to worry.

She may also be given several other medications to take home with her. This is normal. Keeping hydrated with water is probably advisable.

Not everyone requires 6 full rounds of FCR. The number will depend on how your sister responds. Her bloods will be regularly checked throughout her treatment.

For me, the nausea and fatigue was a little difficult - but I was fortunate in getting a very good response to the treatment and hope to have a long remission so it was all worth it. I have been enjoying and appreciating life even more - as I hope your sister and family will too. Keep in touch.