Wegeners and CLL - just scared today

[Meredith]

I have had Weg's for approx. 9 years now. Been on multiple medications. RTX off and on for 3 years. This year they diagnosed me with CLL (chronic leukemia). Now I have to deal with that. They use RTX to treat it also. Last time I went to the cancer doc he said my numbers are rising. When I saw the Weg doctor last week I told him I had a bad cold, lasted 2 weeks. He thinks I had relapse of the Weg's. Go to the cancer doc tomorrow to see how my numbers are doing. If not good I think they will recommend another RTX treatment. I have tried to stay strong thru all this but with working full time I am worn out. The sad part it that I started a weekly workout routine the beginning of the year, thought it would help. Sorry if am complaining but I really don't think my family/friends understand sometimes how bad I feel. Just needed a shoulder to cry on today -

[annekat]

I have had Weg's for approx. 9 years now. Been on multiple medications. RTX off and on for 3 years. This year they diagnosed me with CLL (chronic leukemia). Now I have to deal with that. They use RTX to treat it also. Last time I went to the cancer doc he said my numbers are rising. When I saw the Weg doctor last week I told him I had a bad cold, lasted 2 weeks. He thinks I had relapse of the Weg's. Go to the cancer doc tomorrow to see how my numbers are doing. If not good I think they will recommend another RTX treatment. I have tried to stay strong thru all this but with working full time I am worn out. The sad part it that I started a weekly workout routine the beginning of the year, thought it would help. Sorry if am complaining but I really don't think my family/friends understand sometimes how bad I feel. Just needed a shoulder to cry on today - We are here for you, Meredith, with lots of shoulders to cry on. Most of us can relate to family and friends not really understanding. I don't know how I'd cope with the additional CLL diagnosis. I can only hope it is one of the more treatable varieties. And, already having been on RTX, you at least know how that goes for you. You are in my thoughts today, and please keep us posted.

[Dirty Don]

Hang tough Meredith...try to keep all things in separate boxes as it were & deal with them as they come...best to you...we're here.

[MaxD]

My sympathies are with you Meredith. Sometimes it can all feel overwhelming. Hope you can get some time to yourself to get rested physically and emotionally. All good wishes for you, and keep us informed as the treatment proceeds.

[JeanMarie]

Hi Meredith,
Relax & Time Out!!!!!!

I was diagnosed with Wegs 8/07 & CLL on 5/09. I have never
been treated for CLL but have been treated several times for wegs.
When you say rising numbers, if you mean WBC, that is almost never a
reason to treat. You have time—CLL, unlike other blood cancers , is
almost never an emergency. I know this can seem overwhelming, but I
promise—you are going to be OK.

More than anything else you need to educate yourself. Here are
websites with good info:
Home - CLL Society (http://cllsociety.org/)
and really knowledgeable people on the acor list serv—join it:
LISTSERV 16.0 - CLL List at LISTSERV.ACOR.ORG (http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=CLL)

This one is no longer active, but her info for the newly diagnosed
is excellent. (She retired)
CLL Topics Updates: Dedicated to the Fight Against Chronic Lymphocytic Leukemia (http://updates.clltopics.org/)

Those 3 are a good beginning.

I know it's a bore, but you have to be your own advocate, so find
out everything you can. Do you have a cll specialist? It's important
that you at least see one for a second opinion before you do any
treatment. CLL is pretty rare & the average oncologist doesn't
see it very often & might not be up to date on all the new drugs that have come out in the last few
years.

You are the only other person I know of with both CLL &
Wegs—aren't we lucky!!!We are really a select group!!! :rolleyes1:Please
private message me if you want, I'd be glad to share any info I can

Best Wishes!!!

[Birdie]

I have had Weg's for approx. 9 years now. Been on multiple medications. RTX off and on for 3 years. This year they diagnosed me with CLL (chronic leukemia). Now I have to deal with that. They use RTX to treat it also. Last time I went to the cancer doc he said my numbers are rising. When I saw the Weg doctor last week I told him I had a bad cold, lasted 2 weeks. He thinks I had relapse of the Weg's. Go to the cancer doc tomorrow to see how my numbers are doing. If not good I think they will recommend another RTX treatment. I have tried to stay strong thru all this but with working full time I am worn out. The sad part it that I started a weekly workout routine the beginning of the year, thought it would help. Sorry if am complaining but I really don't think my family/friends understand sometimes how bad I feel. Just needed a shoulder to cry on today -

Hi Meredith,

I know you're just looking for a shoulder but how about some advice. Stop working. Your situation doesn't sound like something you can work around and there is no way you can take care of you while holding a job. I just got approved for social security dissability. You would have no trouble qualifying but not if you're still working. It's a double edged sword sorta thing but it doesn't look like a choice. I'd be in much better condition now if I'd taken my own advice a few years ago. Your situation should, like me, put you on the fast track for approval. It still took four months but was relatively easy, the people I dealt with were fantastic.

Also... I'm new here but it does not take long to realize you don't have to appologize for complaining. :) :) :)

Gary

[Debbie C]

Hi Meredith,sorry you ( and JeanMarie ) got hit with a double whammie. Hopefully those websites she posted will help you. I was also going to suggest, like Gary did, was to get on S.S. You have to much on your plate to work and try to stay healthy. Keep us updated on your apt tomorrow,maybe that dr. can write on a script pad that you are unable to work. Take that ,along with any med records you have and file. And there always a shoulder here. Take care and be strong:hug2:

[Jaha]

Hi Meredith,
I am so sorry that you have to deal with worrying about getting the correct tx and have to work totally wiped out. You would qualify for SSI, pretty much right away. If you ask your doctor to write you a script, that you are unable to work, it helped my case, Deb told me that almost 4 yrs ago and I had all my records. I file it myself and was awarded with 3wks of them receiving the papers. I have a lot less stress now and don't seem to get as many infections. I'm I wrong, but I thought that getting CLL is in the warning papers of RTX? I wish you all the best and please let us know how you are doing.

[drz]

Any time you have more than one serous chronic illness it seems to compound problems. Sorry you have to deal with both. Best wishes for better health.

The treatment for serious case of Wegs generally increases the risk of several types of cancer. Just as most cancer treatments also increase the risk for later development of other types of cancers. There are several that my doctors monitor me for. But our illness and resultant treatment also increase our risk for other health problems that are much more likely to occur than cancer.

[Meredith]

Just got back from the CLL doctor today - white count is up to 21,000. He did not seem to concerned. Will monitor me with some new blood tests (guess they can look at the cells and do some research). Will do this in 3 months. He did not think the CLL needed anymore RTX, but is having my Weg doctor make final decision since he thinks I had a flare. Thank you for your support yesterday - I have a lot to be thankful for, just needed to vent a little.

[Birdie]

I have a lot to be thankful for, just needed to vent a little.

You venting let's me know I'm not alone.

[woz]

Well Meredith, when it comes to luck, you have it all, and unfortunately it hasn't been the best luck,
hang in there I'm sure good luck is just around the corner.

Regards Woz.....

[Alysia]

Sending my prayers and gentle hugs... :hug1: