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Red spots developing on my body.....anyone experience this?


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#1 carrie

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Posted 28 February 2011 - 11:20 AM

My last visit to the doctor he told me that he though I was becoming resistant to the Gleevec.  I have been on Gleevec for four years. I am taking 600mgs.

My PCR bloodwork is going up slightly.  I wrote about this in another post.

Below is part of my other post about having an ABL Kinase Mutation Test done:

I believe that the doctor told me that I reached a CCYR.  On my  PCR bloodwork I have never reached a 0.000 and I seem to fluctuate

even though it does seem like I am always very close to 0.000....So I have never reacher MMR.

I don't understand all of this very well but my BCR-ABL t (9;22)fusion tests were:

7/20/07     0.144

9/14/07     0.144

12/27/07   0.098

3/28/08     0.028

5/28/08     0.018

10/23/08   0.015

1/07/09     0.041

2/23/09     0.035

3/20/09     0.014

4/23/09     0.014

7/27/09     0.027

11/4/09     0.009

2/5/10       0.011

5/3/10       0.004

11/17/11    0.007

2/7/11       0.011

So   he told me today that my numbers are going up and that because I have  never gotten to 0 which I am assuming means 0.000 (CMR)

that he  thinks I am resistant to the Gleevec and that I need to have a blood  test ABL Kinase Mutation to see if I would tolerate the other

medicines. I hope this information might help you.

Now, I am breaking out with red spots on my arms and upper trunk area.  There might be other areas as I have not searched myself fully but they are not

the same size.  Some are larger than others.  They are red in color and some feel slightly raised up.  I looked at the petechia picture with the purpleish colored looking dots on the foot and that does NOT look like what I have. They do not itch or bother me but in the last few days it seems like more are

developing.I was just wondering if these might be a symptom of being RESISTANT to the Gleevec? I did put a call into the doctor and he is calling me back.


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#2 CallMeLucky

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Posted 28 February 2011 - 04:04 PM

The red spots are most likely Cherry Hemangioma's.  They are almost always benign and no one knows exactly what causes them.  I know about this because I have them and during my diagnosis time frame and subsequent starting treatment I noticed a bunch of them show up.  My onc was unimpressed with them and did not think they had much to do with anything.  Not being satisfied with that, I went to see a very good dermatologist who was equally disinterested in my little red spots.  So I've decided to ignore them and they don't bother me much.  At first I thought they were petechiae but both doctors said they weren't.  Actually my GP looked at them too and had the same opinion.  Most likely that is what they are, but I am not a doctor and if you are concerned you should follow up with a dermatologist to confirm.  All the doctors said they had nothing to do with the CML.  I of course had a hard time reconciling this since quite a few showed up around diagnosis time, but it is hard to argue with three different doctors, all of whom I believe are extremely well qualified.  So maybe it is just coincidence, ask PhilB to explain random probabilities and it is quite likely they really have nothing to do with the CML.

As far as your onc and this idea that you are resistant to Gleevec, again, I am not a Dr. but from what I know your doctor is at the very least jumping the gun.  There are many people living many years with CML who would love to have your level of response.  Very few people achieve a complete molecular response.  The primary end point has been defined as a major molecular response, which is a three log reduction.  I'm still not great at looking at other people's numbers, but it looks to me like you have achieved a three log reduction and it is normal for PCR tests to bounce around.  So what does that mean?  Maybe your doctor is right and you are losing response, although it doesn't look like it from these results.  Maybe switching to one of the newer more targeted drugs will get you to CMR, or maybe they won't and you'll be fine hovering where you are.  I think it is up to you and you have to decide what is best for you.  Probably no harm in taking the mutation test to see if something comes up.  Can't go wrong with more information.  But if there is no mutation then switching drugs is something you have to decide on.  I don't know if your doctor is a CML specialist or not.  There is a big push by the drug companies and some doctors to get people on the newer drugs.  Just make sure you know all the upsides and downsides to each drug so you can make the decision that is right for you.  And if you question your doctor, consider seeing a CML specialist.  You could even email one of them.  It would be interesting if you sent your results to Dr. Druker to see what he thought.

Don't know if this helps in anyway, but if nothing else, I wouldn't worry too much about a mutation or losing response.  It doesn't seem like there is a lot to backup that theory at this time.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#3 carrie

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Posted 28 February 2011 - 06:34 PM

CallMeLucky,

Thanks for your reply.  My Oncologist told me to stop the Gleevec for one week to see if they go away.

They are like little hives.  I am on two other medications (not that new), but who knows, one of them

might be causing the problem.

I will go do the blood test tomorrow.  Stop the Gleevec for a week.  I will see my Onc on the 23rd of March.

He is NOT a specialist.  I live in a small rural mountain town and he is the only Oncologist up here so he deals

with all the cancers.

I don't know why he feels that I have to get to a 0.000.  Most comments I have received here in this forum say my numbers

are fine, low enough. So I get concerned about switching to another drug that might create even more side

effects. I teach school and need to keep working.  Yet a different drug might get me to MMR and also have less side

effects where I won't be as tired, won't have diarrhea, weight gain, edema,.....

OH HOW I WISH I HAD A MAGIC CRYSTAL BALL.

Knowing all of the upsides and downsides to each drug is difficult because everyone has different side effects.  I read

many posts about Tasigna and Sprycel but each person has a different experience.

I wish it was more simple.

Maybe I ate something or am experiencing stress hives...who really knows.

Thanks for taking the time to answer.  I really appreciate your kindness.  Bless You

Carrie


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#4 Marnie

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Posted 28 February 2011 - 08:27 PM

Call Me Lucky is right about your numbers.  They are very low, and the very small change is probably statistically insignificant.  Wish my numbers were as good as yours.  As to the spots. . .?????



#5 Trey

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Posted 28 February 2011 - 10:21 PM

You are doing well.  The PCR change is very small and not significant.  I would not worry about it.  If you want to switch drugs, another one might drive your PCRs lower, but that is not entirely necessary.  The red spots we have are often just petechiae and caused by either low platelets or poor quality platelets, sometimes from the Gleevec itself.  They are capillary surface bleeding that is not harmful.



#6 cousineg

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Posted 28 February 2011 - 11:12 PM

HI Carrie,

           When I started taking Gleevec, I had red spots on top of my head. I put a topical hydrocortisone cream and  the red spots have disappeared in one day.

Regards,

             Gilles

For skin problems, see http://www.cml.org.i...olynblasdel.pdf



#7 Mile_Hi_Warrior

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Posted 28 February 2011 - 11:18 PM

Hey Marnie,

I tried to pm you but your box is full. We should get together for a ride,  I'm in Centennial about 25 min south of you.



#8 Marnie

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Posted 01 March 2011 - 06:55 PM

Hey, Curtis. . .I cleaned out my box.  Never checked in there before. .didn't even know there were messages. . .oops!!

Thought I was going to ride in to work this morning, but it was 26 degrees, and I had an early morning meeting, so I just didn't have the time to deal with things.  Love my heated gear, but too lazy to check the tire pressure last night!  Boy, was I jealous of all those I saw on their bikes on the drive home!

Give me a holler anytime you're up for a ride.  We sometimes do the ride to Palmer Lake when we just want to get in a quick ride. . .can't remember the highway number. . .maybe 126?  Hmmm . . that doesn't sound right.  Anyway, that's south, so not too far out of your way.  Once it warms up for good, we'll be out pretty much whenever we can.  Sometimes we'll just do a quick ride up Golden Gate canyon, to the Peak-to-Peak highway, and then back down to town.   Sometimes we go for longer rides.  Once, on a lark, we decided to go to Taos for dinner!  That was a long, long ride.  But fun.  Worst camping spot we've every used. . .in a ditch by the side of the road.

Can't wait for summer vacation. .. I need to get away from work and just have fun.  Things are not so good in education right now, and contract negotiations start up pretty soon. This will be an ugly year at the table.  On the other hand, I'm not willing to get off of the negotiations team now, as I have a lot more at stake with health insurance.  Guess I'll be on the negotiations team until I retire or die, whichever comes first.  With the state cutting nearly $400,000,000 in education it's going to be pretty bad for awhile.

Have a great rest of the week, and by the way. . .what do you ride??

Marnie



#9 dawnhan

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Posted 04 March 2011 - 01:23 PM

I had a lot of them in 12/10 that began at around my armpits and then spread to my entire upper torso, but nothing on my back. They were not itchy, but eventually began to fade.  Unfortunately the residue color (brow to dark-brown) may take time to go away.  It's already March and I still have a lot of dark discoloration spots that don't seem to go away.  My hematologist referred me to an experienced dermatologist, who said the spots were due my taking of the Gleevec that affected my blood.  The spots will eventually disappear, I guess.



#10 carrie

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Posted 05 March 2011 - 10:18 PM

Dawnhan,

I have been off of the Gleevec for 5 days now.  The small blotchy spots are still redish (not dark red-but just redder than my skin).

They are on my front only-- upper chest, breasts, stomache, and some on my inside parts of my arms.  They seem to have faded slighty,

but still there.  Mine do NOT itch either.

I looked up the other two that were suggested and they are not petechiae or cherry hemangioma's according to the pictures that I

looked at.

I guess I should make an appointment with the dermatologist.

THANKS TO EVERYONE FOR YOUR RESPONSES.

IT IS SO NICE TO HAVE A PLACE TO ASK QUESTIONS AND HAVE SO MANY WONDERFUL PEOPLE ANSWER.

THANKS!!!!!!!!!!!!!!!!!!!!!!!

Carrie

I hope that when I start the 600 mgs of Gleevec back up on Monday that it doesn't make me feel more nausea than usual because of the break.


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#11 dawnhan

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Posted 05 March 2011 - 11:41 PM

Carrie,

If what we have are the same, the spots are harmless and only reflect a weakened immune system.  I went through three doctors who didn't know why I've had them.  The third one, my current CML specialist from Georgetown, referred me to the head of Georgetown's dermatology department last week.  The dermatologist didn't give me a name for the rash-like problem during my visit, but it was good to know that I don't have to think about it anymore.  I'll let you know if I have any more specific information from him or my referring hematologist.

Dawn



#12 jamielynn

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Posted 06 March 2011 - 01:26 AM

haven't read responses so it may have been said, but Maria got that and they biopsy one for good measure, it was common Folliculitis. That might be all yours is..



#13 carrie

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Posted 06 March 2011 - 11:13 AM

Dawn, thanks for the information.  Mine does look more like an allergic reaction type of small hive/rash that does

not itch so I think it might be from a low immune system.  I teach school and I am around germs and major

viruses all day.  Plus I had company come in from out of town and stay at our house so I did not get the normal

after school naps, or weekend naps in that I usually do and I was extremely tired and stressed.

Jamielynn, Thanks for your reply.  I looked up the different types of folliculitis and I don't have pain or pus-filled

blisters or itchy white pus-filled bumps so I don't think that is what I have but I appreciate the suggestion.

Thanks again for the help.

Carrie


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#14 GerryL

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Posted 06 March 2011 - 06:26 PM

Carrie,

I had something similar on the backs of my legs - looked a bit like hives, just more of it and it didn't itch. I was on an antihistamine at the time and used a topical antiseptic cream on it - the rash disappeared in around a week or so. It did try to come back when I had bronchitis, but not as bad, I used the cream again and it has disappeared. I haven't seen it since, and touch wood I haven't been sick since.

Gerry



#15 jjubin

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Posted 06 March 2011 - 06:53 PM

Actually try apple cider vinegar on a small spot 3 times a day and see if it helps.  It is a natural remedy for skin issues.  If not, then I'm assuming you have an allergic reation to something.



#16 Guest_billronm_*

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Posted 06 March 2011 - 10:07 PM

Dear Carrie

I found that peppermint hard candy helps the nausea. I tried everything else it's the only thing that worked.

                                                                   Good Luck Billie






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