58 replies to this topic

[Pinkbubbles9642]

Does anyone live in MI and gone to UofM hospital for their cancer? I'm being sent there Monday by my oncologist because I've been on Gleevec since Sep 2010 and I am not responding to treatments. I've been on Gleevec 600 mg and hydrea 500 mg (at one time 6 pills of this a day) and because of all my side effects I'm on vicodin, bp med (always been low until now), depression med, sleeping med and adavan for anxiety. I'm 20 and just really really struggling with everything. This is going to be my 3 bone biopsy but first time at UofM, and might do a spinal tap? I don't know much about them though... Any info or words of encouragement would be appreciated, I'm petrified :'(

[hannibellemo]

Welcome to this discussion board! I hope you are seeing Dr, Moshe Talpaz at U of M as he is one of the few CML specialists. You are lucky to be going there.

Can you give us more information on your situation?  There are many people on here who can give you excellent advice and help you interpret your test results. Why do your current docs think the Gleevec isn't working for you?

Pat

[GerryL]

Hi Pinkbubbles,

Just wanted to say welcome to the site, I'm on 400mg of Gleevec and doing well on it - diagnosed June 2010.

There will be a number of others who will be able to talk to you about the issues you're having at the moment. There is Tasigna and Sprycel available to people who don't respond to Gleevec and once again many people on this site are responding well to the second generation TKIs. We also have some people that are doing well in the trials for the third generation TKIs.

People will start to introduce themselves very soon - I'm from Australia, so it is noon here, but I figure it is still nighttime over in the States.

Trey will probably be the best person to talk about why they might be doing a spinal tap.

Just wanted you to know that you're not alone and we are all here to help where we can and provide support when you need it.

Gerry

[Lori's okay]

Hello Pinkbubbles,

I'm new to this site too....so I can't give you much info but sure can send you good thoughts and wishes! 

I do hope you see a good specialist at UofM.  I saw a specialist at Johns Hopkins briefly and found that amazingly helpful and reassuring.  Hopefully some good answers are just around the corner for you!!

Lori

[Pinkbubbles9642]

Hi Pat,

Thank you for the warm welcome. I am actually being referred to a Dr. Erba there. I keep being told I am very lucky to be sent there but it's still scary. My all my numbers are out of control and my.oncologist can't seem to.get them under control. he's raised my gleevec from 400 to 600 that makes no change they put me on hydrea as well to help my white blood count which helps but as soon as I stop then it goes back. My fish test keeps coming back with high percentages it was like 89% lady time. So he said he wanted to do a bone biopsy, then the next day my nurse calls and says they actually want to send me to uofm dr erba to.try snd find a solution. That I'm young and we need to figure out a long term solution to this since my body isn't taking to even the raising of the gleevec. No one will give me information, they keep saying well dr erba will go over all the results we were going to give you. No one will tell me over the phone and like now my oncologists nurse won'teven call me back. It's frustrating I ask uofm over phone and they say oh we don't know. I understand they can't tell me over the phone but this is wrong. Maybe I'm overreacting because I'm "young and immature" but it's my life like I read you can go into blast stage with in months or years, it's been a year. I had alife reality check at age 20 and it's hard especially since my mom passed away from.cancer two years ago. It's scary being alone and not knowing anything I know in a.few days I will but I've been waiting since week before thanksgiving.

Guess I'll give more info in a week when I know why I'm even being sent

[Pinkbubbles9642]

Thank you Gerry!! I.m glad I found this site, fighting alone has been hard.

[Pinkbubbles9642]

Thank you Lori, I sure hope good news will be coming around the corner before I know it. I'm taking the 3 hr drive to uofm hour it's helpful. Thanks for the support!!!

[Dina]

Hi Pinkbubbles,

Welcome to the site where you will find a great support and lot's of information, I've been dx for about 4 months now and been taking the Tasigna

ever since. From what I have read and understood so far is if Gleevec is not working for you then you should try some other drugs like Tasigna or Sprycel.

You must be very devasteded by the whole situation and I'm so sorry to hear that you are only in your 20's, I'm 36 and there are times when I think I'm too young

to depend on daily medication. I hope you will get some more information at UofM. Good Luck and best wishes!

Dina

[CallMeLucky]

Hi PB,

I'm sorry you find yourself in this situation, but I'm glad you found your way here to this group.  There are many people who know what you are going through and can offer sound advice.

The bad news is that it doesn't sound like your current oncologist is very competent when it comes to treating CML.  To be 15 months into treatment, not have it under control, and not have you on one of the newer TKI drugs is very poor judgement.

The good news is that he finally had the humility to ask for help and you are going to U of MI, which is a top CML cancer center.  Dr. Topaz is one of the leading CML doctors in the world and even if you are not seeing him, seeing one of his colleagues is sure to find you in better hands than you currently are in.

More good news is that CML is very slow moving cancer and people can sometimes go a few years before things get really bad.  There is good reason to be optimistic that in the proper care with an experienced doctor who knows how to treat CML, you can get on top of it and get it under control.  Most people with CML these days are not dying from it.

I would expect when you get to U of MI they will do a full blood work up and bone marrow biopsy to asses what phase of the disease you are in.  They will likely do CBC, FISH, and PCR as well.  I would also expect them to do a Mutation Analysis given your resistance to Gleevec.  When all the results are in they will come up with a plan that is right for you.  Finding the right TKI should get your blood counts under control and get you off the hydrea.  Hopefully they can work to get you off some of the other meds and get you feeling a little more normal again.

I'm sorry your are going through this very difficult time, but try to keep your head up.  There is good reason to be optimistic that in the right hands you should be ok.

Best of luck......

[jjg]

Hi Pink Bubbles,

Welcome to the site. I hope you get useful information from here, I certainly have. I'm a bit older than you (38) but there are a few youngsters, quite a lot of us here in our 30s and many more who are young at heart.

I'm not a medical expert but it doesn't look as though your doc has done a great job with you. Our prognosis shouldn't depend on us being well educated about cml but now that you are here one of our posters, Trey has provided some great resources to help you ask the right questions and make sure you are getting the best care.

This one is for newly diagnosed, which you are not but it's a good read...nearly 40 thousand views, wow!

http://community.lls.org/thread/2600

This one is about the testing methods, your FISH are still very high but hopefully soon you'll be worrying about getting low PCR numbers

http://community.lls.org/docs/DOC-1273

This one is about drug response and resistance, good for you as it seems pretty clear that gleevec is not your drug:

http://community.lls.org/docs/DOC-1276

Here is another post with the link to the guidelines, how you should  be treated:

http://community.lls...e/100915#100915

If you are lucky Trey will pop in and give some suggestions for questions you should ask. If it was me I'd certainly want to know what phase of the disease you are in, when (not if) they are going to do a mutations test and which drug you should be taking. Somewhere along the line, probably after the really important medical stuff I'd be asking what resources they have to help you the person. For example my doctor's office has a physiologist who works exclusively with cancer patients.

It's hard but try not to panic, as others have said CML is a slow disease. There are lots of posts about feeling anxious/lost/sad/depressed, hopefully some of us can help you out.

Keep us posted on how you go Monday.

Josie

[jjg]

Hi again, I just read your other blog post. Yes it is true that you must be very careful not to get pregnant on gleevec or any of the other drugs but it is not a given that you can't have kids. People have been able to first get a very good response to treatment, preferably for quite a few years and then stop treatment long enough to carry a pregnancy. I'm hoping to do that myself but there are complications because of my age. You have heaps of time, but your first priority must be getting yourself a good response to treatment. Don't give up.

[hannibellemo]

Hi, again, PB. Just read your blog (thanks, Josie for the heads up). You are too young to being going through this alone, I'm so sorry you lost your Mom at such a young age! Don't worry, there are alot of "moms' on this site and we will help you get through this as best as we can!

I thought you might be interested in a book written by Erin Zammett. She was dxed with CML when she was just a year or two older than you are now. Google her for more info. She must be in her late 20's or early 30's now. She worked(s) for a major magazine and wrote a regular column about her journey. She married and now has two children so don't give up hope! Oh, the book's title is, "My (So-Called) Normal Life". It might help you get through this weekend if you can read it or read some of her columns on-line.

Do you have a friend who can go with you on Monday? It helps to have a second pair of ears and someone who can take notes for you. Don't worry if you have to go alone, you may have to be more assertive and try to make sure you understand what they are telling you before you let them move on. Remember the docs work for you so don't feel intimidated!

Cancer Sucks! So true, at any age. But it's also the name of a web site for young people with cancer. Check it out. Oh, and there are several CML groups on facebook, some better than others. Be careful about getting info from the internet on CML, much of it is outdated and downright scary!

You have lots of people in your corner on this discussion board. We are here to cheer your triumphs, listen with a sympathetic ear and a virtual ((hug)) when you are down and give you lots of good information if you need it. Thank goodness for the internet because it must have been awful to go through this thinking you were all alone!

Good luck on Monday and please let us know what you find out so we can start building that support for you!

Pat

[Trey]

PB,

Dr Erba will likely want to switch drugs, so you can expect that discussion.  Gleevec does not work for everyone, even at higher dosage, so the solution is to move on to another one of the two available drugs (Sprycel and Tasigna).  This has worked well for most of the people in your situation.  I am surprised your current Onc did not already switch drugs.  You will be in good hands at UoM. 

Dr Erba info:

http://www.uofmhealt... a physician/68

[Tedsey]

PB,

I am so sad you are going through all this.  My therapist tells me that we are confronting issues that people much, much further along in life experience (and I am older than you).  That sucks.  I totally understand your depression and sleeping issues.  Losing response to Gleevec now just adds to the whole emotional mess.  After about 9 months, I showed signs of possibly losing response to Gleevec, but it was gradual.  I was switched to Sprycel and have a much better response.  How long has it been since you lost response to Gleevec?  Was it sudden?  I feel for you because you must wait so long and no one is telling you what you want to know.  I went through that with my first onc.

When we are in a panic or stressed, how we perceive time changes.  No info can come fast enough.  Everything changes.  Heightened sensitivity when anxious can cause us to only see and think of doom and gloom.  Your situation appears serious, but it may also be solved with just a drug change.  Not sure why some oncs just raise the Gleevec level and not just switch to another drug.  This seems kind of outdated unless you are having such a great response with Gleevec.  And I can see where sending you to a "specialist" can cause a lot of fear.  However, it may be that your onc now just does not know how to manage CML well.  Some oncs do; some don't.  But I can imagine how scary it is when an onc, who you trusted (at least I hope you did), admits he doesn't know how to handle what is going on with you.  But it may just be that.  Not that your situation is beyond repair.

As for antidepressants, it took about a year for me to get the right dose to control my depression (something I struggled with for years, got over, then relapsed when dx with CML).  I can clearly say, I too was a mess for about a year after dx.  I totally get how you feel.  I still slip, but not as often.  Now, I can sleep better and know what to do when anxiety attacks (I was dx Nov. '09).  I also talk to a cognitive behavioral therapist weekly.  And I stay away from too many hopeless articles about CML.  Life can be so unfair.  The mere irony of your mother's death from cancer, (I also lost my mother relatively young), and now you being diagnosed with cancer...  I am so sorry.  My heart aches for you.  I wish for a total turn-around for you.  Don't give up.  The worst thing is to be alone when you struggle.  I know I need the people here to beat some sense into me when I start to freak out and fear the end is near.  If you prefer the "tough love" approach, let us know.  There are members here who can very sensitively administer that.  But I am a marshmallow.  Please let us know how you are doing.  Please feel free to vent, or whatever you need.  We are here for you.

Take care,

Tedsey

[Pinkbubbles9642]

Thank you for the information Trey!

[Pinkbubbles9642]

Thank you so much for the book information and online articles, I will have to swing by barns and noble tomorrow and see if they have it. I had got another book called "The Yellow Wallpaper" to keep my mind at ease for my 5 hour appointment but maybe that book would be more meaningful to me. I have someone driving and dropping me off then going to come pick me up, I don't want to make anyone have to stay in a hospital from 9:00AM first appointment until after 3:30 last appointment (according to their schedule they sent me). Plus the last two times I had a bone biopsy done I cried like a baby the whole time and I rather not let someone see me like that. It's embarrassing enough the doctor and nurse had to see me, though the nurse did ask to hold me hand while I cried which was nice. I guess I have to much stubborness in me to allow people I know see me weak. Heck a lot of people didn't even know I had it until lately because I don't want pitty from anyone, I just want to be normal again. This "oh you'll take one pill everyday and life a normal life" is a bunch of bologna :-( (at least for me so far). I find myself debating even taking the pill every night because it makes my body hurt so bad. No one around me really understands either, not even my primary care doctor. She's nice and I love her as a doctor cause she is there for me unlike my oncologist but because I'm so depressed she was telling me maybe I should go to a inpatient fascility to get help getting my emotions back in control.. I'm not crazy, like this is why I don'tlet people see how bad off I am because they just want to send me away. I'm not crazy, I'm 20, I lost my mom, I was dx with cancer, my bf of over a yr left me when i was dx and there has been so much more like I can't help but break down : (. I took care of my momma for 6 years by myself while she battled before losing her life and like I use to feel robbed of my teenage years sometimes (I know selfish and HORRIBLE of me, I love my momma so much..) and now I just feel robbed of the rest of my life like ugh I don't know I'm sorry to just ramble on, I don't need or want pitty... I just want to get everything out some how and I go to therapy and sit there staring at the floor because I don't know how to open up to someone. I've been to 4 therapists since feb of this year, I got two times and then stop because I feel stupid. Oh well, Thanks for listening...... I'll keep you posted

[Pinkbubbles9642]

I want to take a moment to thank EVERYONE who has responded to my post. I means so much to mean to know that there are people out there who not even knowing me can have so much care and kind words to say. I have a feeling a lot of my free time will be spent on this site for support, it's nice to finally have people who understand. I know my friends try to but they don't really get why I can't go out all night or parties and everything else, I am to tired and hurt. It takes everything I have to work full time and go to college full time, even though I did take this semester off and I'm currently on STD through my work for what's going on. I just keep telling myself by hitting rock bottom know just means that I'll be so much more experianced then my peers and my 30's will kick booty! Also for the people who asked, my gleevec hasn't been working for about 6 months and my oncologist just keeps saying lets see what happens. I don't trust him and if not for my primary care doctor I wouldn't know anything that's going on. Anyways, Thank you all again it means so so so much to me and I will def keep everyone posted on what happens this week. I'm staying in Ann Arbor for the week and then it's Xmas and then my 21st bday next week... Wont be much of one but hey I made it to 21 yay...

[pamsouth]

PinkBubble,

Regarding your post ""I don't want pitty from anyone, I just want to be normal again. This "oh you'll take one pill everyday and life a normal life" is a bunch of bologna :-( (at least for me so far). I find myself debating even taking the pill every night because it makes my body hurt so bad. No one around me really understands either, not even my primary care doctor. She's nice and I love her as a doctor cause she is there for me unlike my oncologist but because I'm so depressed she was telling me maybe I should go to a inpatient fascility to get help getting my emotions back in control.. I'm not crazy, like this is why I don'tlet people see how bad off I am because they just want to send me away. I'm not crazy, I'm 20, I lost my mom, I was dx with cancer, my bf of over a yr left me when i was dx and there has been so much more like I can't help but break down : (. I took care of my momma for 6 years by myself while she battled before losing her life and like I use to feel robbed of my teenage years sometimes (I know selfish and HORRIBLE""

Those were my exact thoughts when I was diagnosed in 2005 and I was 57.  We had taken care of my mom for 3 years and she had recently passed away and we had just put down our 13 year old dog and right at diagnoses my aunt and uncle passed.  My heart aches for you.  I sometimes would think, am I going crazy or do the doctors not get it, it's like "OH Pam aren't these drugs great,, aren't you lucky"  then you keep telling them how awful you feel, and they act like "well now we can't blame everything on Gleevec, now can we"  I could go on and on.  Even my daughter who was an RN in ICU children leading hospital, her husband a doc.  Would say oh mom just take the pill, your fine, you just have to many white cell, to many good cells.  Then she would scold me for doing all the research and getting a second and third opinion, so there you go, no sympathy from family.  Then you feel guilty because you don't want to be pitted and you should be grateful for the wonder drug at the time that was making me sicking even though I was being told give it time, more time, little more time..... It is just play scary.

However  it has been 6 years since that first horrible, scary, sickly year.  Things have changed a lot for the better.  My body and mind have adapted to the Gleevec. I have or am working on changing my mind focus though, instead of saying I have cancer or CML, I say the cancer is leaving my body!  Just little tricks of the mind that help keep the stress level down.  It works kind of like this for me, if I say,  I have cancer I can feel the stress go thru my whole being, but if I say it is leaving me, my body/spirit feels better. Just a few holistic things I have learned.

It's just recently my doctor wanted to change my Gleevec to another TKI, won't go into it a long story, but then I had well maybe not a panic attack, but I sure did head to another doctor for a second opinion.  All I could think of was changing chemical going thru that night mare again like I did the first year on Gleevec. Then I knew I had to bone up on the new drugs and my labs, and make some decision.  After all remember you are your own best a vacate. Like Trey says you are driving the bus, you just may not know it yet, because it is hard when you are in a vulnerable state, but you will get stronger, I promise you will!!

So the discussion board has help me a lot to just vent.  Things have calmed down and doing a lot better now.  But if things get complicated again, yep I will head back to this board. 

I met some fabulous folks on here that really, I mean really get it!  When you talk to other people many times they don't really have a clue.

Anyhow I want you to do know, that at your young age of 20 I really believe for you there will be a cure.  I might not see it my lifetime, but I think you will!! 

Just remember as your new doctors get you on the right course, remember your mom would want you to take extra TLC of yourself!  Prayer and meditation does help.  I love my massage and physical therapy and also my certified healing touch practitioner, everything works like a team, body, mind & spirit, your total being!

Sending you prayer and mom hugs xoxo

[cousineg]

Hi Pinkbubbles,

I am a French Canadian from Montreal. In August 2004, the white cells and platelets
started to increase. I took 3 pills of Hydrea.In December 2004, the platelets increased to 1,400,000 I took 6 pills of Hydrea.
In January 2005, I started to take Agrylin. The platelets came down. In June 2005, I took 6 pills of Hydrea, 3 pills of Agrylin, 1 pill
of Coumadin, 1 pill of Aspirin, 1 pill of Allopurinol.....   It was horrible!

The doctor thought that I had ET (Essential thrombocythemia). But the test PCR came positive
in June 2005 and I added 400 mg of Gleevec with the other pills. In 3 weeks I was in hematologic remission. After, I stopped to take all the others pills. I
was PCRU in August 2008. In September 2011, I lost my CMR. In June 2003, I had atrial fibrillation and since that time, I take Coumadin.

Anagrelide (Agrylin/Xagrid, Shire) is a drug used for the treatment of essential
thrombocytosis (ET; essential thrombocythemia), or overproduction of blood platelets. It also has been used in the treatment of
chronic myeloid leukemia.

 

I hope that you will be in good shape soon. You will a big difference when you will stop taking 6 pills of Hydrea.

Sincerely,   Gilles

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