21 replies to this topic

[Judy2]

Hi Everyone. This is my first time posting...anywhere...ever. Last Feb. I had an appointment to see my rheumatologist. I had been having rheumatological problems , among other things, for about one year. My doc. drew blood and later that evening he called to tell me I had to go to the emergency room, I was in renal failure. After one week in the hospital I was sent to a specialist and was dx with a rare autoimmune disease called Wegeners. I began treatment for the Wegeners, infusions which I have to have once every 4 months for the rest of my life. Thankfully, I began to feel better, my kidney function started to improve. In May I noticed I was getting black and blue marks so I went to see my specialist. He drew blood and called me the next day, my white blood count was 81k. He sent me to the leukemia clinic at a nearby hospital, they did a BMB and 5 days later I got the news- I have CML. My PCR at dx was 44%, at 3 mo. 70%, 4mo. 54% and 5 mo. 55%. I  have been on Gleevec and about to switch to Tasigna. I am totally overwhelmed- 2 major illnesses within 3 mo. I'm finding it very hard to cope with having both of these conditions.

I have been reading the postings on this discussion board for the last two months, that is, when my very unreliable computer is working. I am amazed at what a kind and compassionate group of people are in this community. I have been so envious of all the support everyone gets here so I finally decided to post. Although I am grateful that there is medicine for both these conditions it's scary to think I have to take so much strong medicine for the rest of my life. I will be switching to the Tasigna Thursday and am nervous about starting it. Thanks in advance for any support anyone might be able to offer.

Judy

[mikefromillinois]

Hi Judy, Welcome and thank you for sharing.  As most here will assure you, it does get less scary over time.  In the meantime hang in there and come back often - you'll find much support here and a lot of very helpful information.  Wishing you good health...   Mike

P.S. - Trey's blog is great: http://treyscml.blogspot.com/

and there are a lot of good video clips on the internet here: http://www.nationalc...iety.org/videos

and in other places too.  For me, hearing the experts talk about CML has been very reassuring

[Marnie]

Hi, Judy. . .

Welcome to the club, but sorry you had to join.  Best of luck as you start Tasigna.  It has very good results for most people.  This forum is a great place to ask questions and get good information.

Hope to see more of you.

Marnie

[Judy2]

Thank you, everyone, for your support. Billie, I'm 53 and do remember Judy Judy Judy, everyone used to say that to me when I was younger. Thanks for the memories.  Also, what does "Branch" mean at the bottom of the postings? (I really am a computer idiot).

Judy

[Fas]

Hi Judy,

Welcome to our exclusive CML club, I look forward to the day this club closes down for ever.  As other have shared they are making advances in CML all the time.  When I was first diagnosed the only TKI in use was Gleevec.  Now we are awaiting the release of a third generation of TKIs.  That is pretty remarkable for a rare form of leukemia.  We all respond to the medications differently.   It can sometimes take a while to find the right medication and dose that works for you, and then time for you body to adjust.  It is all so overwhelming at first, but it does get easier and I know that is hard to believe.  I have participated in CML, Gleevec boards over the years on and off.  I always learn a lot whenever I plug back in and I have found some really lovely, supportive people on this one. 

Hang in there and best of luck with the use of Tasigna,

Fran      

[Susan61]

Hi Judy:  So glad you joined in.  You will see that you can talk to anyone about your CML, but its the people who are Living With IT Like You who can answer your questions and give support where needed.  You can see that their are a few TKI drugs used for CML.  Its finding the one that works for you.  I was put on Gleevec when it was the only TKI available.  That was 11 years ago, and I am still on the same dose of 400Mg. a day. It has done its job for me, and I am PCRU which means undetected now since 2003.

     You will get side effects from any drug you take, but they do get better with time.  Looks like the Gleevec was not for you, and there are a lot of people on here who are onTasigna who can help you with any questions you have.

    You will do good.  Give your body and mind time to adjust.  You can live a normal life.  I have a very loving and supportive family, and that means a lot also.  Hope we keep hearing from you.  I was diagnosed i 1998

Susan 61

[Judy2]

Hi Susan and everyone. I was on 200 mg Gleevec as my kidney function is still only about 30%. I tried to go up to 300 mg but the side effects were too numerous. I guess Gleevec sits in the kidneys. I will be starting on 600 mg of the Tasigna and am quite worried about the side effects (I probably shouldn't have read the black box warning, regarding the heart, on the Internet). I have to try it, though. You guys are all so great and have been through so much. I'm praying for everyone on this site.

Judy

[CallMeLucky]

Branching is if you want to break off a thread into a new thread.  Sometimes we use the term "highjacked" when a conversation takes a turn and is no longer about the original post, although that can come across negative - it is really just the natural progression of a conversation, some times it deviates to a different topic.  So in those cases where you are posting to a long thread and taking it in another direction, you can branch it off and everything from that point down will become a new thread/conversation.

The thing is, I think they turned that feature off, I can't seem to do it anymore if I wanted to.  I know they turned off "LIKE", I think they may have turned off branching too.

[ritan/]

oh my goodness. that must be very scary! hugs and welcome! i'm too newly diagnosed to offer much but hugs and support.

[ritan/]

hemmoroids are a side effect of which drug? i've been having pretty serious bleeding part of the time but had just assumed it was from the hemmoroids i had from having kids. hmmmmmmmm

[Judy2]

I just want to say, thank you again everyone for your support.

Judy

[Judy2]

Mike, Thanks for the link to Trey's blog. It's great to have all that info just one click away.

Judy

[Susan61]

Hi Judy:  I am diagnosed with Chronic Kidney Disease as well as my CML.  My problem started before the Gleevec, and they are saying its all the blood pressure medications and fluctuating blood pressure along with all my other health problems.  I am at 53% on my GFR whenever I get my kidney checked, and they should be at 60.  I did find that I do not drink enough fluids.  If I am not thirsty I do not drink, and that is odd with me being Diabetic.  My husband is Diabetic, and is constantly sitting with a large mug of water or ice tea or anything without sugar.  He cannot belive I am never thirsty.  I am trying now to get my fluids into me, because they keep telling me I am dehydrated.  I did notice when I drink enough water my kidney functions are good.  I do not know if anyone else knows anything about that, but with me the Gleevec has not seemed to make mine any worse than what they were.

   Again so glad you joined in here with us.  We share a lot of things that are going on in our lives as we discuss our CML. 

   All this medical stuff can get frustrating sometimes and hard to understand also.

Susan

[Judy2]

Hi Susan. Thank you so much for sharing. Do you have to get your creatinine checked more frequently since you've been on the Gleevec?  I, too, don't drink enough water, I really need to start drinking more. My GFR as of 3 weeks ago was 24 which is the best it's been in a long time. Last Feb. I was about 10% of kidney function and again in June at about 11% as I had a uric acid stone due to the death of WBC. The Wegeners is the cause of my kidney problems (if it's not one thing it's another). Do you feel you  have had more side effects in general from the Gleevec because of your Chronic Kidney Disease? Do you find it difficult to manage both your diabetes and CML?  I am so glad you are PCRU and hopefully one day there will be a cure and these meds will be a thing of the past.

Judy

[Happycat]

Judy, Judy, Judy!  I remember it, too.  Love Cary Grant.  My favorite is Arsenic and Old Lace.

Welcome to our little club.  I'm so proud of you for getting on and posting.  We are honored that this site was your first post.

Traci

[nathaliece]

Judy -

Welcome!  We can all empathize because we were scared and overwhelmed early in our treatment (and on occasion, still).   This group has been such a godsend to me.  I am sorry you have to join the CML journey and will keep you in my prayers.

Nat

[Susan61]

Hi Judy:  My Creatnine levels are in range most of the time.  Once in awhile they go off a little bit.  Its the GFR thats never in the normal range.  I am not due to get blood work until Jan.  I do not go more often than required by my protocol for my CML.  I do my routine blood work every 3 months, and then I do it again in 6 months with a PCR test.

I have been doing this for so long.  I do have a abnormal Parathyroid because of the kidneys, and that number has been jumping around for over 6 years. They put me through the Scans and everything for the Parathyroid Gland.

I guess we should both start getting more fluids in us, and see how our results turn out.  Even on a real hot day in the summer, I do not look for a cold drink.  Its only if I eat something salty that I look for water.  Supposed to watch the salt intake also, which I am sure you have to do also.  I am a very heavy coffee drinker, and I know I need to cut back, because Coffee will dehydrate you if your not also drinking your water.

      I cannot say that the Diabetes gives me any trouble right now.  I should be more diligent in watching my sugars I have to admit that.

    I think sometimes we have so many different issues that we get fed up trying to figure them all out.  You sound like your doing good, and know what to do and not do.

Susan

[Judy2]

Thank you, Susan, for taking the time to respond.

Judy