Day6

[Mandy56]

Finished the F.C. medication last night and, as expected, feel totally drained today. Just walked down the garden to feed the hens , with my mask in place to filter out any nasties, and felt shattered when I made it back to the house. That’s a distance of around 350ft there and back. Is that other people’s experience and can I expect to feel stronger in a few days?

[Jm954 Administrator]

Well done for even getting out - I'm sure you'll feel better in a few days - just in time for the next course! Keep going Mandy.

[devonrr]

Yes, first week can “knock you side ways”. But as three weeks progress you’ll get your energy back.

Best not to plan anything In the first week.

If in the weeks 3 and 4 you still feel totally exhausted report this to your chemo clinic.

Be happy the drugs are doing their work your body just needs to recuperate each time.

Don’t be down have happy thoughts. You can do it.

[Sailormoon11]

Good for you Mandy on making the effort it’s good to try n stay focused and positive as others say at least you know the drugs are doing their job!!! Round 1 done 👏👏👏

[GMa27]

Glad that first one is over! Do you get Rixtuxan too?

Rest and when you feel some energy back....go back to your garden!

[Mandy56 in reply to GMa27]

Thanks GM. RITUXIMAB is via a drip at the hospital, so i had for two days and then F.C. at home for the rest of the week. It’s definitely a lovely day for the garden, so will be heading out there next - covered in suncream of course

[GMa27 in reply to Mandy56]

My FCR will be in the chemo section of my doc's office. 3 days in a row every 25 days. You mentioned FC at home....do you literally mean in your house? Do you live in USA?

Did you get a port?

I can smell the flowers!

[Mandy56 in reply to GMa27]

They do it slightly different in the UK then, where I live. My first chemo was in hospital and I stayed in for two and a bit days. During that time the nurses were constantly checking myresponse to the chemo and Rituximab and on day 3, I couldn’t leave until they had that day’s blood test results. FC was in tablet form, 4 of one, 5 of the other and yes, I just take them in my home. I have a hotline number to call in the event of any concerns.

The cherry blossom is heavenly, wish I could upload a photo to show you!

🌸

[GMa27 in reply to Mandy56]

Oh... pills...that make sense now. Mine is all thru a port.

🌹🥀🌼🌷🌺

[MsLockYourPosts Passed Volunteer]

Tip from Chris, aka CLLCanada, that I always think of when people mention the pills - open them over a bowl so you don't end up crawling on the floor if one "escapes"..

[Cllcanada Top Poster CURE Hero in reply to MsLockYourPosts]

Thanks PK.. my knees still hurt from that episode... 😯

[Psmithuk in reply to MsLockYourPosts]

Yes, very important! I have a load of heart tablets to sort out for the week, and am very careful after scrabbling around for the tiny one before my nosy dog found it!

[MF79]

By the end of week 2 I would pick up. Be social weeks 3/4 and get ready for week 1 again. I remember walking to the shops once in week 2. Arrived home a sweaty, cursing blob. Oh happy days.

[Mandy56 in reply to MF79]

How are you now?

[MF79]

2 years post treatment. In remission. My bone marrow was clear post FCR. Had a review this week and everything is liking good. Back in 4 months. It took me time to get my fitness back and I do still get tired if I go a long walk. That’s probably due to my lack of fitness. I took early retirement because I could. But have got 7 months work , 3 days starting in June.

Hope the rest of your treatment goes well. Be kind to yourself and rest up when you need to.

[Mandy56 in reply to MF79]

So pleased for you. Long may it continue. My consultant has patients who are into Year 15 remission. He says they are tentatively talking about FCR being a cure in some cases. Let’s hope.

[MF79 in reply to Mandy56]

And that is what I am hoping for. And will be my hope for you too.

Mags

[BellaBee10]

Top tip of Chris' re taking the tablets out over a bowl. I didn't do it until after some went awol on me. I was so worried about my dog finding it. First week of each round can feel a bit like being in a chemical shock. I went back to work after round one and got spasms from the GCSF, a colleague told me I looked like I was s8)!&)(;g myself when I got them. Much to everyone's relief, I gave up trying to work until it was finished. I picked up a lot towards the end of each round. When I look back at photos of that year, I packed quite a lot in at the end of each cycle. We're all so different. My FCR started in June and I loved watching nature over the summer. I'm normally too busy and miss loads. You'll be able to brew up some elderflower cordial soon! Well done you. Wishing you a lovely weekend. It's gorgeous isn't it. If you want to PM me any time, please feel free.

Nic

[Mandy56 in reply to BellaBee10]

Thanks so much for that. I’d love to PM you, but don’t know how?

[BellaBee10 in reply to Mandy56]

I'll PM you and see if that works...

[AussieNeil Partner Administrator in reply to Mandy56]

Here are the Help pages on sending and viewing PMs/Chats:

support.healthunlocked.com/...

support.healthunlocked.com/...

[MsLockYourPosts Passed Volunteer in reply to Mandy56]

They call it Chat here - top of the page. Or click on Bella Bee at the top of her message. It should take you to her profile page where you should see Message (right side top). You two behave yourselves on chat! LOL!

[BellaBee10 in reply to MsLockYourPosts]

Hahaha. We're on Facebook already.

[MF79 in reply to BellaBee10]

I’m with Nic, I didn’t work but weeks 3 and 4 were get out with dog and meet people.

[AntonioC]

Amazing you can walk out on day 4. Super well done. Tiredness is the norm as far as I am told. Keep strong and build energy for the next cycles. Chemo effects tend to build up. Ah and be easy on yourself the attack we are getting is massive

[HJ_2]

Hi Mandy. I have just started Flair trial on Wednesday and was also allocated the FCR arm. I am traveling from South Cumbria to the Christie Hospital in Manchester for treatment under the care of Adrian Bloor. I was kept in for two nights and discharged yesterday. I have two more days of F and C to take. I just wanted to say how your post last week helped me feel reassured because like me you are traveling some distance for treatment. I hope things are going well for you.

Helen

[Mandy56 in reply to HJ_2]

Hi Helen,

lovely to hear from you. Hopefully you are feeling OKish at the moment, but be prepared when the FCR kicks in in s couple of days, you may feel rough. There again, you might just be tired. I was very nauseous, despite the tablets, so the hospital are going to change them next time.

I don’t know how you felt when you were allocated FCR? I was so disappointed, as I’d hoped for an easier treatment, but actually, if our bodies can take it, this is the one with the best outcome. The Christie will have made sure you are suitable, as the Royal Marsden have done with me .

If you’re of Facebook, look for me - Mandy Adamson in Clitheroe. The photo is me snuggling my German Shepherd and we are both blondes! Sometimes it can be easier to communicate on FB or you can always phone me on messenger to compare notes. This is without doubt the scariest, horrible thing I have done and the support from the people on Healthunlocked and one lady in particular, has helped so much. Nearest and dearest are of course worried and want to help, but they cannot know how we really feel.

Lots of rest and pampering and think in terms of probably a week of not feeling good after you finish the tablets.

Take care. Xxx

[HJ_2]

Hi Mandy. Yes I was very disappointed also to be randomised to FCR but I am happy that I am being treated at the Christie Hospital and I highly recommend Dr Bloor and his team to anyone considering cll specialists. Thank you so much for your advice and I am sure I will be messaging you to compare notes.

Take Care

Helen