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CLL

CLL

Posted by Adg on May 30, 2014 2:47 pm

Hi, I am a 56 year old woman who was diagnosed with CLL 10 years ago.  I have been monitored with watchful waiting during this time.  Upon my last appointment with my oncologist, he informed me the time is coming to start chemo treatments.  Since I have not yet  had any treatments so far, any feedback on what to expect will be gratefully appreciated!

Re: CLL

Posted by heather1 on May 30, 2014 5:02 pm

Hi Adg,

Glad that you found our community. I just tried a couple of things that might be helpful for you to find useful information on the site:
  • If you put CLL in the search bar at the top of the page it returns links to all the posts that contain the phrase "CLL". I suspect if you put in other associated key words (e.g., leukemia) you might find other discussions that relate, too. If you know what the name of your chemo drug is you can try entering it, also.
  • If you go to the members tab you will be at the "member search" section. You can search members by cancer type - Leukemia - and find others with CLL.
  • As I mentioned to Joe yesterday, we just posted info on an upcoming event  about drug treatments for CLL. This might be really interesting for you

Re: CLL

Posted by Blazin on May 31, 2014 9:17 am

Wow it great that you went 10 yrs without having any treatment and sucks now that you will soon be starting. As heather said if you have the kind of chemo meds they will be giving you it would help others to tell you what they experienced with those. I myself was diagnosed in oct 2009 one mnth after my 40th b-day and unfortunately had to start chemo right away. At first I was nervous a little scared about side effects and the big one losing my hair lol. I asked a lot of questions about the drugs whether I thought they were stupid or not. I found were I get treatment the other patients are a good source of info on the drugs. And help you get through your first couple of treatments. I hope that happens for you. Everyone is different I found taking in knowledge from everyone and sorting it out to best suit me. I found my own way by using parts of other patients experiences and putting them together and it has made my journey easier. STAY away from the negative experiences people tell you you are different and they will only scare you more. Fortunately I had no side effects at all. I was given my first chemo for about 3 months and it didnt work at all even when they increased the dose so they started me on a second chemo for six months it only put mein remission for aapproximately 1 1/2 yrs compared to the norm of 4 plus years. But there are 2 explanations for that one the drug should have been used with a second but wasnt approved in canada yet my wife and i fought for it and it did get approved within a coue months as doctor told me it would be about 2 yrs it was to late for me ti get it as I was already on my fourth round. The other is the one that kicked me in the who who.I had a rare gene called 17p/p53 deletuon gene which there is no approved treatment for. So iI havent had Chemo in a few yrs. Like I said everyone is different you will find your way and never ever be afaid of asking question about your drugs. Stay strong. I use a quote I found a while ago. I HAVE STRENGTH THAT GUVES NE COURAGE AND I HAVE COURAGE THAT GIVES ME STRENGTH. If there is anything I might be able ti help you with you no were I am. All the best and kick CANCERS butt.

Re: CLL

Posted by Adg on Jun 1, 2014 12:15 pm

Hi, thank you for your response.  I was not sure if anyone would actually comment.  The drugs that I will be potentially receiving are a fludarabine injection, rituximab injection, and cyclophosphamide injection.  I am trying to find out about these drugs,  side effects, etc.  Any info people can give will be appreciated.  

Re: CLL

Posted by Blazin on Jul 8, 2014 10:09 am

Sorry it took so long to get back to you. I had Fludarabine as my second treatment and was to have rutuximab with it but wasn't approved here yet my oncologist told me it was a couple years away so I fought and it was approved in the next few months. It was to late for me. But it was here for others and I see a lot of people on it. When I was talking Fludarabine it was in pill form and I had absolutely no side effects from it. But without the rutuximab my remission was short 1 1/2yrs compared to 4+ yrs. They started me on high dose methylapregnezolone (steroids) 5 days straight every month from Feb 2013 to Apr 2014 just to keep the CLL in check. They were talking stem cell transplant butam not keen on it stats were not good enough for me at the time. So I researched up and coming drugs and found one called ibrutinib that was approved in the USA in Feb and is now in trials in Canada. Like I said before with my 17p gene there are no approved drugs here yet. I fought to get this and as of today I took my first dose. I don't no what to expect from it for side effects other than the normal. The side effects I was told with Fludarabine were nausea, abdominal pain, diarea just the normal stuff. I am not in a trial with ibrutinib I managed to get it a different way. I mention this drug to you in case it becomes an option in the future. I only found one patient to talk to about this and he is in the states. He had 90%+ CLL in his marrow and after 18 months he has under 10%. I've been told this drug is good for CLL even without the mutation gene. Did they check for other deletion genes as they didn't find mine until 2012 and that's why other therapies weren't working. Best of luck on your treatments stay strong and positive. If you have any questions I might be able to help you with please ask. I've done so much research on our cancer and love to help out people if I can.

Re: CLL

Posted by Blazin on Jul 8, 2014 10:22 am

I forgot to ask are you in Canada and we're are you getting your treatment at. I talk to lots of people all over so I was just wondering.

Re: CLL

Posted by Windancer on Jul 8, 2014 11:14 am

Adg:
The drugs that I will be potentially receiving are a fludarabine injection, rituximab injection, and cyclophosphamide injection.  I am trying to find out about these drugs,  side effects, etc.  Any info people can give will be appreciated.  
Hi Adg

I was diagnosed with Mantle Cell Lymphoma a dozen years ago, I have had 2 Stem Cell transplants, both an autologus (own cells) and an allogeneic (donour cells) and lots of chemo.

Way back in 2003 I had the drugs you speak of Fludarabine, Rituxan and Cyclphosphamide. I can't say they were real easy to tolerate but really never caused me too much problems. Yes I lost my hair, probably the first of 4 or 5 times but in the big picture it was nothing. I realize it is much easier for a male than a female to be bald, but to me it is a small price to pay for being alive.

I originally had the CHOP treatment::


C: Cytoxan® (cyclophosphamide) 
H: Adriamycin® (hydroxy doxorubicin) 
O: vincristine (Oncovin®) 
P: Prednisone

then went on to the RICE:

R - Rituximab
I
 - Ifosfamide
C
 - Carboplatin
E
 - Etoposide

Then after harvesting my own stem cells, I had my first SCT

As others have mentioned to you, nausea, abdominal pain, diarea seem to be the most prevalent. my insight is several years old, every day the protocol seems different due to new advances in the eradication of cancer. I am very fortunate I have not taken any chemo in 6 years so My info may be somewhat dated.

Terry
"Never Give Up, Go Around, Go Over, Go Through but Never Ever Give Up".

Re: CLL

Posted by Blazin on Aug 30, 2014 11:59 am

Hi blazin here just checking in to see if u started chemo and how you are tolerating it. I hope you are breezing through it. All the best. Joe