Frustrated: Hi. I started FCR in March... - CLL Support

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Frustrated

CLLPLODDER
CLLPLODDER

Hi. I started FCR in March completing 5 rounds with minimal problems apart from a little sickness and this was eased when they started giving me IV infusions. At round four my platelets and neutrophils dropped dramatically and due to this treatment was stopped at round five. Since then I have had a very bad cold/cough which persisted for over a month and struggled even with the strongest anti biotics.

I have had a blood transfusion and am having filgrastim injections daily which I administer myself - along with 2/3 visits a week to hospital.

My platelet count remains low although is slowly improving and it is now 38. My neutrophils went up to 6.1 and injections were stopped but after 3 days went back to 1.6.

Am feeling quite down at present which is just not me . Had hoped to be feeling so much better post treatment but right now I feel far worse than before treatment started. So sorry for my negativity. I just need reassurance and encouragement that this is not unusual and there is light st the end of the tunnel.

26 Replies
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My experience was similar to yours, although the antibiotics did work with the severe cough, and I didn't need filgrastim at the end of treatment (I did in the middle). You need to give it a bit longer. I started to noticeably improve after four or five months post treatment. I have read that it can take a year or more for bone marrow recovery. Just keep looking after yourself - good diet, and exercise when you can.

Best wishes,

John

CLLPLODDER
CLLPLODDER in reply to Senecio

Thank you John. Just a positive word is all I need. Being on a trial they are eager to do BMB to see why it's not recovering but with platelets being so low this is not advised. I know I am impatient - it's early days but just want to start getting on with my life . I love life and can't wait to start getting back to normal. Thank you John once more.

Janet

Senecio
Senecio in reply to CLLPLODDER

You will get a BMB on the FLAIR trial after three months anyway. Your neutrophils are only slightly low, and the neutrophil numbers do move around a lot anyway. I'm rooting for you - we FCR people who were disappointed by being on the less glamorous arm of the FLAIR trial need to stick together!

John

CLLPLODDER
CLLPLODDER in reply to Senecio

Absolutely! Onwards and upwards! We will indeed!

J

cllady01
cllady01Volunteer

J. Your being down is understandable. You do not feel well. And, you have been through and are still going through chemo treatment. Your post is in no way negative, just honest as to what is happening.

I do not have any treatment experience, but the history for FCR is the possibility of a longer remission than for any treatment I have read about. (Not that I have read everything.)

So, as Senecio has said, it may not be the newsy, glamorous treatment being talked about, it has remained a treatment for some CLLl populations for good reason.

Hoping for you a comeback of your blood levels sooner than later and that the BM will be evidenced as recovering even before they do the biopsy.

CLLPLODDER
CLLPLODDER in reply to cllady01

Thank you so much. You have no idea how a few encouraging words can help so much! I'm just impatient and when the weather is good as it is here now and want to be out in the garden sorting it out but haven't the energy. It will return one day I'm sure and there will be no stopping me.

Wishing you all the very best for what ever lies ahead and with this wonderful site we are never alone!

God bless

Janet

lankisterguy
lankisterguyVolunteer

Hi CLLPLODDER,

-

Since you have a cough and antibiotics are not solving it quickly, have any of your doctors tested for fungal infection of the lungs?

-

From our low immunity and especially when Neuts are low, we can get Pneumocystis or Aspergillosis / Aspergillus

See: en.wikipedia.org/wiki/Pneum...

cdc.gov/fungal/diseases/asp...

Len

Hi Len,

Thank you for this.

After the third round of anti biotics my cough did subside but I still feel 'chesty' although the cough has all but gone. I am back at Hospital on Monday and will mention this. Many thanks.

Jan

Did I just get a message from you? Tried to upload it but nothing! Don't want you to think I'm rude and ignoring you but nothing .....

MsLockYourPosts
MsLockYourPostsVolunteer in reply to CLLPLODDER

Was your question for lankisterguy?

Yes- sorry did I send to you? Oops!

lankisterguy
lankisterguyVolunteer in reply to CLLPLODDER

I was copying from this page to reply to another post,

healthunlocked.com/cllsuppo...

I may have hit a return and sent you a blank message, sorry.

Len

MsLockYourPosts
MsLockYourPostsVolunteer in reply to CLLPLODDER

You didn't reply to me, I just noticed your question. HU changed the way replies are set up in a way that can be confusing. You now have to hit reply under the post of the person you are directing your reply to, not the last one in the thread, so in this case you would have to go back up to Len's post, or if your reply is intended for Senecio, in this thread, you would have to go back up to his post and reply. That way the intended person gets a notification (little bell thing at the top) about your reply. Confusing until you process how it works.

You can also type in an @with the user name of the person you want to see something, which is what I did with LankisterGuy, which sends a notification to them.

Thank you. I really struggle with the site . Xx

MsLockYourPosts
MsLockYourPostsVolunteer in reply to CLLPLODDER

The set up is confusing at times. If you are having trouble with something you can always click on members at the top of the page, then administrator or volunteer on the left, then any of the names that come up for help.

Thank you. I really need help at times so this has helped, Jan

Hello, I had a very simular experience with FCR and had to end treatment after round four. I was hospitalized for a week when my counts fell very low. I received daily blood and platelet transfusions and a few IVIG infusions. After that week I had to go to the clinic every three days and got blood tansfusions and platelets when my levels fell below a certain range. I also got the injections. It took about two months for my levels to start rising and now I am on monthly IVIG's and injections. My platelets have leveled off at around 70,000 and my HMG is still low (about 9.1). My doctor says that my levels could remain at this point from now on or could rise more. We'll see. I do feel very good and am back at work full time. I only get winded if I walk up a hill or stairs.

Hang in there. It takes time, but things will improve.

CHris

CLLPLODDER
CLLPLODDER in reply to noeagaman

Thank you Chris. My people in charge are telling me they are expecting - be it ever so slowly my numbers to go up naturally although I have had 2 units of blood. Today HBG is 89 and platelets 46 which is much improved slthoughstill a way to go. Thanks to filgrastim injection neutrophils are now 5.5 but expect by Monday (as they have stopped then) they will probably be down again. Time will tell.

So happy to hear you are feeling well enough to go. Ack to work and long may that continue. Wishing you all the very best.

Jan

noeagaman
noeagaman in reply to CLLPLODDER

Thanks Jan! Hopefully you will be back to feeling great in the not too distant future too...:)

CLLPLODDER
CLLPLODDER in reply to noeagaman

Must be patient a bit longer but it's good to hear positivity. Thank you! J

Ohannie236
Ohannie236 in reply to noeagaman

So glad for you, noeagaman--that you're feeling better and are back at work! I do Round 6 mid September, if my numbers are willing, and just want to wish you very well as you go forward. Love and prayers from Ohio!

noeagaman
noeagaman in reply to Ohannie236

Thanks you so much. I hope that you get a great remission from your FCR as well.

Newdawn
NewdawnAdministrator

Sending you huge best wishes Jan. This treatment is such an assault on us both physically and emotionally so be kind to yourself because you’re doing great in the midst of a mammoth challenge.

Hope things are on the up soon and normal life can resume as soon as possible 😊

Newdawn

Many thanks Newdawn - looking forward to that day so very much. This site has been a wonderful support and I cannot thank you all enough. Jan

Jan, I just finished Round 5 of FCR and am very thankful to be feeling much better over all, with a few glitches along the way. Just want to send love and prayers from Ohio and say that I hope things will improve for you very soon. You've been through a lot and it may just take time to heal, but one thing about all this is that it brings out strengths you didn't even know you had. Wishing you much better days up ahead, and thanks for your post that helps us all feel safe to express our own vulnerabilities. You've probably helped many of us with your honesty and resilient spirit. A big hug to you!

Not a problem Len. Just so you know I didn't ignore you. Hope all is good! Jan

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