14 replies to this topic

[r06ue1]

Hello all, 

 

My name is Jeff, I was diagnosed at the end of August after having a blood test done by my family physician.  My stomach seemed very large on the left side (Spleen but at the time I thought it was my stomach) and it began to hurt which lead me to the family doctor.  He found my WBC count was around 370 and told me to go immediately to the hospital.  More tests and a transfer to UH Seidman Cancer Center in downtown where they confirmed that I had CML.  My first night there they started me off on Hydrea to get my blood count down and I stayed on that for three weeks (insurance company was holding up the switch to Gleevec).  I've been on Gleevec ever since then and seemed to be doing well until I ate an apple (yeah, an apple) a few weeks ago and had a very bad reaction to that.  Later that week I went in to the emergency room for heart palpitations and my Oncologist believed it was due to anxiety from my allergic reaction earlier in the week.  I tested all okay at the ER, no issues but they did give me some heart medication to slow my pulse (it was around 140 when I went in).  I've only used it three times in the last three weeks and only when I noticed my pulse or blood pressure high.  

 

Two weeks after my diagnosis my baby girl was born.  

 

For Gleevec, the only side affects so far were some soreness in my hips and feeling tired.  I'm not sure if the tiredness is from the Gleevec however since I was like this before taking the medicine also.  

 

Anyone have any advice for me?  My first test (I guess it is a PCR but I thought my Onc. said BCR) is December 18th, hope I am making good progress.  So far he believes I am doing great but we'll see how it goes.  

 

Anyway, just wanted to say hello to everyone and give a shout-out to Trey who's blog I found (great info!) which lead me here.

[hannibellemo]

Welcome, R06ue1,

 

Congratulations on the birth of your daughter! You will be around to see her marry and have children of her own!

 

Your doc could have said either. The test is called RT-PCR (Reverse transcription polymerase chain reaction - we usually just call it PCR) and it checks for the amount of BCR-ABL in a our blood (the gene translocation that causes CML).

 

Let us know your results from your PCR.

[r06ue1]

Thanks hannibellemo!  

 

i sure hope you're right about my daughter, love her so much.  

[Trey]

Welcome, Jeff.  The first several months the body struggles with both the CML and adjusting to the TKI drug, so can be rough.  After that things usually start getting slowly better.  Of course the key is drug response, so make sure you are getting PCR and/or FISH every 3 months, CMP to monitor overall health, and regular CBCs until the important blood counts "normalize" (a relative term).

 

Keep us updated on your progress. 

[Dom]

Hello Jeff,

I have BP problems since long before my cml, and it is difficult to control. I was diagnosed with cml during a heart operation, receiving my fifth stent. I really can't tell if gleevec has made it worse. But gleevec is supposed to be the best tki if you have cardio vascular problems. At least that's what my oncologist told me.

About the hip pains, look into taking a magnesium supplement, but make sure your doctor okays it. A lot of people here take it. I take it and it helped a lot. Before I took it, I tore a leg muscle that had me walking with a cane for a month. And the tear did not occur from stress. I was just standing still when it happened.

About the future, you can expect a nice long life. I'm 18 months on gleevec, and my last test was .02, and I expect to be pcru at my next test. My only reminding side effect (and I guess I can't be sure it comes from gleevec) is that I get a little light headed when I drive t high speeds.

[r06ue1]

Thanks everyone, good information.  

 

I haven't really had the hip pain, just when I first began the medication but it has since subsided.  I think my Oncologist is right about the blood pressure being anxiety though as I was extremely fearful and stressed that week after I ate that apple.  

 

Has anyone else ever had an allergic reaction from eating fruit?  I'm afraid to go near it now, I knew to stay away from grapefruit and I had been eating apples daily prior to that reaction, the only difference was the time and the type of apple.

[hannibellemo]

Did they consider that it might have been a chemical or some other substance ON the apple that caused the reaction and not the apple itself?

 

Thought you might find this interesting, "When an Apple Allergy Suddenly Appears"

 

http://www.nbcnews.c...pears-1C6436946

 

After reading this article I realized this happened to me as a teenager. My mom was cleaning strawberries and I ate a couple while we were talking. I immediately started developing hives. In fact, they were so bad my family doctor considered hospitalization.

 

I did not have at the time, but have since developed, seasonal allergies. BTW, I've never had another reaction to strawberries.

[r06ue1]

Yep, they did ask me if I washed it thoroughly.  I washed it for about 30 seconds, I don't like the thought of some chemical being on the fruit or vegetables I'm about to consume.  Possible I missed a spot?  Sure is but I kind of doubt it.  I've never had a reaction before and have eaten apples all my life (even those Golden Delicious types), the only difference was the Gleevec, the type of apple and the time I ate it.  I have also eaten a lot of apples while taking Gleevec, just different kinds (Gala and Pink Lady for the most part) but that was my first Golden Delicious while on Gleevec.

[Harper3994]

I am also a new member. Was diagnosed in July during a routine blood work up. I was diagnosed with DCIS stage 0 breast cancer the previous November and was told I had to take a estrogen blocking med.for 5 yrs. Oncologist thought my platelets too high and red cells "too thick". Insisted on BMB and came back as CML. Still in shock but find this forum very comforting. On Tasigna and wondering how often everyone has to see their doctor. Had another BMB at Moffitt in Tampa and am MMR.

[Trey]

Harper,

Welcome.  After MMR most Oncs go to a six month PCR/appointment cycle. 

[Harper3994]

Thank you Trey for responding so quickly. I have been reading your blogs since I was diagnosed and appreciate all you are doing to help us along. I still get labs every 3 weeks and see the doc once a month. . She told me today that this is their protocol for patients on Tasigna. I have a lot of anxiety concerning my health this past year since I had never been sick. Breast cancer and CML in 6 months span has been hard to handle. Going to the Dr.'s so much makes me more nervous.

[r06ue1]

Welcome Harper3994 to the forums.  

 

Very sorry to hear of your double whammy, hope you can recover fully from both.  There is a lot of good news out there and I'm sure more will be coming in the future so just stay positive.  

 

I guess every Oncologist is different; with mine, I started off every week, than every two weeks, than once a month, now I'm going in for my three month appointment and the next one he says is six months (if everything is going well of course).  This will be my first appointment (12/18) with the BCR (or PCR, not sure which one he said) test so I am both nervous and excited at the same time and always hoping for the best possible news.  

 

Just stay positive, eat healthy and exercise and you'll be fine.  

[hannibellemo]

Harper,

 

Welcome! Glad things are going so well for you on the CML side, Hope you are doing fine with the breast cancer, too. 

What exactly is stage 0, if you don't mind sharing?

 

Your onc sounds like she is being overly cautious. As long as everything is going good at MMR you shouldn't have to see her more than every 6 months; 3-5 months for the conservative oncs. Monthly is just making money for the clinic. 

[Harper3994]

Stage 0 means non-invasive and has not spread anywhere in the body. They told me breast cancer and CML not related in any way. So much to learn regarding cancer. I hope someday we won't have to be scared anymore.

[hannibellemo]

Thank you, that seems to be the very best news for a cancer dx (if you have to have one, I mean)!  

 

Eventually, as time passes CML will become less of a burden, mentally and emotionally, To have received the double whammy just is unfair! Five years seems to be a magical number for breast cancer survivors, though, so good luck!