Update

Had my follow up, he was very nice about everything. He said that the PET scan came back good. I do have a lot more nodules/lymp nodes than I thought but they are ABOUT the same size as in November. We are assuming the Nodules (which are also about the same size as November) I had some type of virus and they changed shapes, and were a lot more painful so I guess that's why I noticed them more. The anti-viral they had put me on helped so he decided to be safe and go ahead and put me on 2 more weeks but less times a day.

He had planned on treating me but then my blood work came back A LOT better than the beg. of Jan. so he's decided to do watch and wait again, monthly blood work and see him every 3 months. He agreed that they should write medical journals about me!

I'm glad not to get treatment yet but on the other hand this up and down ride is NOT easy for me!!!

In the meantime I am completely exhausted but his only solution was to take me off work (YEAH but BOO I can't afford it, I'm a teacher so I have to save what little time I have for when he decides to actually treat me and with my body it could be March or it could be next year!)

Thank you for all the advice and support during that scary week with those bumps, they were EXTREMELY painful and I guess we'll never know "exactly" why they hurt so much except "some virus"

Rebecca

9 Replies

oldestnewest
  • Great news... the lesson here is it might be CLL or it might be something else, that is why a visit to a doctor is always a wise choice... and visit sooner rather than later.

    Nipping these things in the bud is the name of the CLL game... waiting to see if it gets better by itself is 'old school' ... those days are over... ;-)

    We need to be proactive... as you were.

    ~chris

  • Thanks Rebecca, for your good news update. It's as much an art as a science working out when to start treatment - hence the benefit of seeing a CLL expert.

    Be encouraged that your oncologist was nice about everything - see you were right to follow it up.

    I'm pleased for your sake that treatment has been deferred. That will give you more time to build up leave - hopefully your health and stamina will enable that :) . Start treatment too early and you may face more difficult times due to reduced immunity and side effects, even with the new non-chemo treatments. Leave it too late and your body may not have enough of a buffer to get you through the lows temporarily caused by the treatment.

    Much of what this community is about is helping us all know what we should do to live best with our CLL - taking advantage of the combined experiences of over 1,600 living experts. You did the right thing in asking and others in a similar situation will no doubt later be guided by your experience.

    Neil

  • Hi Rebecca, It's great to hear that things are looking better for you, and treatment can be postponed.

    I can understand the stress of all the ups and downs though, and the difficult decisions re whether/when to take time off work. My symptoms have been wavering around on the brink of needing treatment these last few months too. Just when it seems it's really got to happen, things seem to stabilise a bit, and it gets put off again. But at least I am retired from work, and don't have that to worry about.

    Maybe you've mentioned it before and I missed it, but what treatment has been suggested for you?

    Wishing you well.

    Paula

  • No, this is the first time he's mentioned what he would treat me with...One drug was something with an O, I forgot. To be honest, my roommate knows all this and I just haven't written it down. He doesn't want to use FCR because he feels it would be too harsh at my age and with my Asthma/breathing issues (?).

    I'd love to retire!

  • Obintuzumab and chlorambucil... my guess...

  • Yes that sounds right. Are those regular Chemo drugs?

  • Chlorambucil is a old chemo therapy from the 1960s... Gazyva (obinutuzumab) is the next generation Rituxan...it is a state- of - the art immunotherapy... not chemo... monoclonal antibodies.

  • Hi as others have said its good news to delay starting treatment but when you have prepared yourself its hard to adjust to "real" life again. Also its just continuing with W & W. I think this can be the hardest thing about CLL as you just never know what's around the corner. Best wishes

  • Hi Rebecca

    You are very young to have a diagnosis of CLL and I know from personal experience how toxic FCR is. It looks as though your doctor is reasonably knowledgeable about cll treatments by suggesting other treatments - especially in view of your other health issues.

    I was on w@w for a few years and treatment often seemed imminent! In the end I decided to just push on with living as normally as possible and abandoned the "will I, won't I" uncertainty - though it was not always easy.

    I'm glad your blood counts have improved and hope the pain subsides further. Keep in touch.

You may also like...