Disappointing day...: As you may know, my... - CLL Support

CLL Support

22,476 members38,613 posts

Disappointing day...

jules_c profile image
17 Replies

As you may know, my husband went through 6 treatments FCR ending December 2015 after 4 1/2 years W&W. Came through it like a champ, had BMB late August this year. Got the news that the results couldn't look better from his CLL specialist and then about 6 weeks ago felt a lump in his neck again after being completely clear. I did a good job of sticking my head in the sand until the dr appointment today. We saw the associate with whom we did the treatment for location purposes (so not our specialist) and he says it is CLL, I guess I knew that. His blood counts are WBC 2.63, Lymph# .49 Neut # 1.74 so they are happy with that and we shouldn't worry just come back in 3 months or if there are any other changes. Here we go again. My apologies for rambling. I feel like someone let the air out of my balloon. I thought it would be longer before this :(

Written by
jules_c profile image
jules_c
To view profiles and participate in discussions please or .
Read more about...

The ability to reply to this post has been turned off.

17 Replies
Newdawn profile image
NewdawnAdministrator

I can imagine how you must feel Jules because we have to hope remission periods are so much longer after the rigours of treatment. However these are low levels and further good news is the anticipated approval for ibrutinib for previously failed treatments. I'm not sure if he'd meet the criteria or other options are available but it's a positive we didn't have before. I hope things can stabilise however but it must be a real blow to you both. Back on the W&W!

Hope you can have a good Christmas.

Best wishes,

Newdawn

HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin

Jules it must be very difficult for you both to get your heads around as your hubbies counts seem to indicate he is in remission. Enjoy Christmas as best you can while you have one eye on the new lump , don't be afraid of gaining a further opinion if it continues to develop

Nick

jules_c profile image
jules_c in reply to HAIRBEAR_UK

Thanks, I know it's not the end of the world, so hopefully this is just one bad day for me. Appreciate the encouraging words, that's why I am here with those that know best :)

Jules

London_Girl profile image
London_Girl

Hi Jules

I'm gutted to hear this. It's not what anyone wants to hear so soon after a course of treatment that had done so well.

I will be thinking of you and your husband. Im a 'wife of' and I know how worrying it can be. Try and stay positive and remember not all is lost. There is so much more that can be done.

Take care

Maria xx

sumok profile image
sumok in reply to London_Girl

another "wife of" here sympathising with the blow of this news, sending warm thoughts. hold to the knowledge that should the time for new treatment come, the options are just getting better and better. take care of yourself too.

Loves2walk profile image
Loves2walk

I'll be sending positive thoughts your way.

From a fellow "wife of".

AmericanRonin profile image
AmericanRonin

I can sympathize... I went through six months of FCR in 2011, also like a champ, with no trace of any problem afterwards. But then 2.5 years later, it was back. I went through another six months of FCR. Everything looked fine. But then a few months later, a telltale lump appeared on my neck. A year later (six months ago) I started Imbruvica. It seems to be going well...but it's expensive and you have to take it "forever."

Corin850 profile image
Corin850

Hi. So it's only been two years nearly. Unlucky. There are great new treatments out there when he's ready. Sorry about the angst

Love from Corin

serendipity1 profile image
serendipity1

Hi jules_c

Your allowed a bad day and to get it out of your system. I do sympathise with you. As a new person I remember reading all your posts to read up on FCR and the impact and how your husband was in the office, etc, you gave us a lot of hope, so I hope for you both that his numbers continue to do well and you stay like this for a long time to come. :-)

Cammie profile image
Cammie

Jules

It's a bummer but as Neil says the numbers are very good and you remember that lumps and bumps go up and down.

Let's hope things stay stable for a long time during this period of watch and wait.

We are all with you.

Geoff

New-Attitude profile image
New-Attitude

Stay positive. Another bump in the road but not as large as everything he has gone through. You guys can get through this together. Sending hugs across the miles.

fieldmeadow profile image
fieldmeadow

Not the best news for you both to have a few weeks before Christmas - but you are experienced watchers and waiters - so I hope you can apply the positives of the pre-treatment years and enjoy more special moments in the coming months.

Those of us who are currently well will be thinking of you both, and all those who are struggling at the present time. Keep in touch.

Jenferdog profile image
Jenferdog

Oh Jules I am so sorry to hear your disappointing news! I understand exactly how you must feel. I so hope your husband has a long break before needing any more treatment but its a blow that the dark shadow has to come back. Try and be positive and put it to the back of your minds and enjoy Christmas. Thinking of you xxxx (ps I did reply to your message earlier in the year, have you seen it?)

Sue xxx

jules_c profile image
jules_c in reply to Jenferdog

I did see it. We are hoping to plan a trip for next June. I will keep in touch and thanks for your reply, hope all is going well for you.

Jenferdog profile image
Jenferdog

Well so far so good, but your husband's experience goes to show that we can't ever relax with this bloody thing! (Excuse my French! :) )

casanova profile image
casanova

Hello Jules, so sorry that your husband's remission period has not been as you hoped. However the numbers are low and I hope they stay that way for a lengthy period. I too had a very short remission following FCR but I tried, and still try, to enjoy life in between treatment regimes whilst on the dreaded W&W. I hope you both stay well and enjoy the Christmas period. All good wishes for 2017.

Maureen UK

jules_c profile image
jules_c in reply to casanova

Thank you, Best to you in 2017 also! Julie

The ability to reply to this post has been turned off.

You may also like...

Never-ending cycle of hope and disappointment.

improving. But today he's being barrier-nursed again, because his WBC count is down. The care...

First day on Clinical Trial Ibrutinib / Venetoclax

was diagnosed with CLL. I have been on W&W up until now. At first I refused treatment and tried the...

CLL and Heat (Night and day sweats)

tonight from the CLL Society site that \\" PART OF THE REASON FOR THE NIGHT SWEATS WITH CLL IS...

Wait & Watch - What does it entail?

succumbing to CLL 2) New & better treatments are emerging at a rapid pace. 3) QOL with new...

Road to a BMT... oops just got there (Day +101)

The results of his bone marrow biopsy at Day 60 were overwhelming as there was 0% of CLL present -...