20 replies to this topic

[Floa7]

I was diagnosed in Jan 2012 at 100% Went onto Gleevec 400 mg. At 6 months PCR was down to 0. On my three month check-ups that followed my BCR-ABL went to .3%, then .5% and now I am up to .9% IS.

 My doctor said I could switch to another pill. Well I just got a 90 day supply of Gleevec, so I am  waiting for the next 3 month check-up. Is it ok to stay on Gleevec or should I switch?

 

My son also has CML He was on Gleevec and now on 70mg of Sprycel His BCR-AML was at .015, he is doing good

 

The neighbor boy at 16 years old, has AML, He goes for BMT next week. He was in remission for a year.

[JPD]

Did your doc not have a preference?  I would like to think mine would have told me what he preferred.  I would think 3 mos wont make a great difference, so I might be inclined to wait... but then again seeing the numbers going up has to be a bit upsetting.

 

You and your son both have CML? - what kind of odds are those!  Im not sure I believe there isnt any environmental cause that is going on with this crappy disease. And they swear its no hereditary, too.  Ugh.  Just keep taking the pills and keep believing.  Not much else we can do.

[Trey]

You could continue for another 3 month cycle on Gleevec.  If you lose MMR a switch would be needed.

[familyof6]

Floa7,

 

I've always wondered what might actually be the cause of CML. I went to high school in a small town in northern lower Michigan. About 12 years ago a teacher from my old high school was diagnosed with CML.  5 years ago I was diagnosed with CML and I always wonder if it is just a total coincidence or if it is something we were both exposed to living in a town with major chemical factories. I would be interested in what kind of industry might be surrounding you and your family? 

[winespritzer]

Dear Trey et al,

Just got my 6 mos BCR-ABL and it's .368. At 3 mos it was .385. At 1 mo. it was 20 down from 100. Is this a bad omen?

Thanks. Any info would be appreciated. I am on 100 mg Sprycel - diagnosed 1/14/14.

What can I do to "push" it?

Winespritzer

Edited by winespritzer, 21 July 2014 - 08:58 AM.

[Trey]

WS,

You are doing well enough, and are likely in a "response plateau" (my term for this).  After the drugs kill off the lower level progenitor leukemic cells, it must then work on the higher level cells, which are harder to kill (simplified explanation).  So a plateau in drug response (flat PCR results) is fairly normal at about 12 - 18 months or so.  Your drug dosage is high enough, so I would not push it higher.  That can often cause low blood counts and require drug breaks, which is worse.

[Floa7]

Did your doc not have a preference?  I would like to think mine would have told me what he preferred.  I would think 3 mos wont make a great difference, so I might be inclined to wait... but then again seeing the numbers going up has to be a bit upsetting.

 

You and your son both have CML? - what kind of odds are those!  Im not sure I believe there isnt any environmental cause that is going on with this crappy disease. And they swear its no hereditary, too.  Ugh.  Just keep taking the pills and keep believing.  Not much else we can do.

My doc said I could switch, but I had just got 3 months supply of Gleevec, So we are waiting for my 3 month check-up in August 22. I won't refill it this time till I see doc

.

Within a 6 month period 4 of us got diagnosed with CML, within 5 houses of my son and me. I do live in a heavy manufacturing city. Diesel engines, mufflers, crankshafts etc. But in 2008 we had a major flood, no telling what got into the river that day for chemicals.

 

My sister, 1200 miles away, had high platelets, was put on hydroxareah and alpurinal  [sp], 8 yrs ago. She still takes the hydrox. Her doc said it could go into CML. Is it hereditary?

 

Well we have it and living with it every day.

[winespritzer]

Dear Trey,

Thank you very much for your answer. My doctor had told me he expected to see a MMR at the 6 mos. test - that certainly added to my disappointment.  However, now I know what might really happen.

Thanks again,

Winespritzer

[Trey]

WS,

Your Onc encouraged unrealistic expectations.  MMR average is closer to 18 months.

[gerry]

MMR at six months - your doc was shooting for the stars.

[winespritzer]

Dear Trey and Gerry,

 

I wouldn't be coping as well as I am without your knowledge, support AND my LLS Support Group!

 

Yup, the doctor was ??? - not sure if he's trying to offset his initial meeting with me when I told him I knew I had leukemia, had hit age 70, had a good life, had quit my job already, cleaned OUT my house and was ready to meet God or the Devil! I had no clue about TKI's -just knew a few folks who had died from leukemia.

 

Wow, I thought maybe I could wean myself off the Sprycel in a year since I thought I was doing so well. Was hoping to reclaim my memory and energy - maybe also eat raw oysters and drink wine again! I probably will anyway.

 

Thank you so, so much.

Winespritzer

[gerry]

Hi,

I was hoping to reach MMR at 5 months, I had swapped doctors and was having a BMB with him. He had to disappoint me and tell me I had reached CyCR. LOL He was happy with the result. I was MMR at the next test six months later.

[hannibellemo]

Hi, WS,

 

What's holding you back from the raw oysters and the wine? I eat sushi and drink wine, just had some last night. Can't help you with the memory and the energy, but our TKIs at least give us an alternative to blame it on. If we didn't have CML we'd blame it on our age!

 

Good luck!

 

Pat

[winespritzer]

Hi Gerry and Pat,

 

Hoping the next test in 3 months is on the upswing.

 

My liver enzymes increased 3 mos ago. Both my internist and onc advised me not to drink or eat raw oysters and clams. 

 

BUT  I will  have a few fried clams/wine sips, etc when I get to Provincetown,MA,  the end point of the Pan Mass Challenge for Dana Farber on August 1 and 2. My son's cycling the 190 miles for all of us!

 

Yes, if I couldn't blame the tki's for everything, I'd be blaming my memory lapses on my 'resistance' to blueberries!

 

Thanks much,

Winespritzer

[hannibellemo]

Hi, WS,

 

Well, at least you have a good reason if you have to give up a couple of the things that make life worth living!

 

Thank your son for me! What a great time he is having, I'm sure. This week is RAGBRAI here in Iowa. (Des Moines Register's Annual Great Bike Ride Across Iowa.) This is the 40th year and it starts every year with riders dipping their rear wheel in the Missouri River and ends 7 days later with riders dipping their front wheel in the Mississippi with about 500 miles in between. Riders come from all over the world for this.

 

If he is an enthusiast I know he would have a great time. Mason City was an overnight host community this year. Imagine hosting a party for 22,000 riders and their support teams! I was in charge of providing shuttle transportation for the day and we provided 12,000 rides. So much fun!

 

http://www.desmoines...-city/13038585/

 

The link is for photos of the ride from Forest City to Mason City. As you can see I'm still fueled on adrenalin from Wednesday.  

 

Pat

[winespritzer]

Dear Pat,

 

I can feel the energy and enthusiasm in those photos. I know my son would love to be a part of RAGBRAI and who knows what the next year will bring? Anything is possible - he's a genuine backpacker, etc.

 

And my cousin's daughter did the Boston Marathon for LLS!

 

We are all lucky for them. And I am lucky for this forum.

 

Thanks for everything.

Winespritzer

[Marnie]

Fun pics!  I almost did the RAGBRAI when I was in college.  Instead I did a similar (though not nearly as big) ride in southern Minnesota.  A couple got married mid-ride, and since we were near my hometown, I called my parents and had them bring my harp over so I could provide music for the wedding.  The bride and groom entered the "wedding hall" under a bridge of people holding their bicycle pumps.

 

Marnie

[hannibellemo]

Marnie,

 

You play the harp?! My goodness, girl, what other secrets are you keeping from us? Was that ride in Minnesota along the Root River? (I forgot you are from southern MN.) That's a beautiful area in eastern MN.

 

Pat

[Marnie]

As a kid, I loved staying up late and watching Marx Brother's movies.  Loved Harpo.  So when I got to college (Gustavus Adolphus) and learned that they offered harp lessons free to freshmen, I signed up.  When I got my first teaching job, I was also a coach.  My first coaching paycheck paid for a piano, and my second coaching paycheck paid for my harp (obviously not a $35,000 concert pedal harp).  I used to earn a little money playing dinner parties and weddings. 

 

Anyway, music is "my thing."  I play piano, flute, piccolo, guitar, hammered dulcimer, harp, and have recently gotten hooked on ukulele.  I used to play in a semi-professional handbell choir, but gave that up after probably 15 years.  

 

I know. . .it seems a little weird.  ..a motorcycling harpist.  The harp came first.  

 

Marnie