8 replies to this topic

[R0f03l]

Greetings, my name is Rafael, I'm 24 years old live in Brazil, as promised I bring my account of 1 year of use of imatinib and is a brief summary.

PCR results: Undetectable believe.

Treatment: A war! I treatment by SUS for being poor and without money, controlled by the government, and the government is corupto and treatment is the most precarious possible and the cheapest possible, the government cuts various types of tests and procedures and we patients were suffering and living the risk line because the government can simply cancel the medication and I'll die?

Side-effects of imatinib: It was two months lying sense pain as fose stabs of pain in addition to fever and after initiation of Imatinib medication.
After this time these unbearable pain and suffered with canker sores and ulcers in the mouth and throat.
Today  several cramps all day in the left leg and abdomen, high and low pressure (any time I have a heart attack) several red spots all over the body, fatigue, weakness, problems in the gut (I have to do surgery ), to the teeth that were excellent were stained because of the medicine to treat cold sore and ulceres.
  
Today I live in the care of my parents.
 
After the diagnosis of CML I lost my freedom, I dropped my dreams to keep me alive, do not know how will my future.

If someone can take me in the chat group (I do not know what is the social network in the US) you can insert myself in this group?
I have no account and do not like facebook more if you have another social network and want to invite me I thank you now.

[ ] Rafael .

[thatguy]

Hey buddy, I'm sorry to hear. I can't imagine those circumstances in addition to the diagnosis. Are you able to get routine testing and medication?

[hannibellemo]

Rafael,

 

Welcome, it looks like you have already joined this group since you have been able to post. Please post anytime! So sorry to read of the problems you have been having. The one bright spot appears to be that you have responded to the imatinib and you believe you are undetectable?

 

Cramps are a very real problem with imatinib. Many people have found relief by using potassium and magnesium supplements. Is that something you can obtain where you live?

 

Good luck and please let us know how you are doing. 

[AllTheseYears]

Rafael:  Hang in there.  I've taken Gleevec for more than 14 years; had many ups and downs...but I'm alive!  In my case, the initial side effects of treatment subsided after a while.  I wish you the best in your new journey.  Things sound mighty rough. 

[snowboots]

Rafael, welcome to our forum. I too have been on imatinib for one year. I must say the first year was so difficult but many side effects of the medication are now subsiding. Please keep faith and stay in touch with this group. They have been more helpful to me than I could ever say. If we can allay any of your fears you will feel much better just from less anxiety. I have found that the members of our forum have just about heard it all and are willing to share their insights and information freely.

[R0f03l]

Hey buddy, I'm sorry to hear. I can't imagine those circumstances in addition to the diagnosis. Are you able to get routine testing and medication?

 

Test routine I have used only in an emergency, and the only medication imatinib and some other remedy requested by the doctor .Some drugs I do use on their own.

 

Thanks, no doubt I am responding.

 

abs

[R0f03l]

Rafael,

 

Welcome, it looks like you have already joined this group since you have been able to post. Please post anytime! So sorry to read of the problems you have been having. The one bright spot appears to be that you have responded to the imatinib and you believe you are undetectable?

 

Cramps are a very real problem with imatinib. Many people have found relief by using potassium and magnesium supplements. Is that something you can obtain where you live?

 

Good luck and please let us know how you are doing. 

 

 

Undetectable is not able to measure the mutation to be very minimal in examining PCRU.

I believe that the cramps are not eternal (as I use imatinib) for I feel every day and these supplements (magnesium and potassium) here in Brazil is very expensive because the dollar cost 4x the actual value (BRasil currency ), complementary try eating bananas, but I feel that this is due to cramps and stress in the muscles.

 

I will continue to report more I write a post and get a good time disappeared.

 

abs.

[R0f03l]

Rafael:  Hang in there.  I've taken Gleevec for more than 14 years; had many ups and downs...but I'm alive!  In my case, the initial side effects of treatment subsided after a while.  I wish you the best in your new journey.  Things sound mighty rough. 

 

Being honest I do not see myself using imatinib for 14 years of my life because of side-effects which restricted my life this year and uso.Te also wish all the best and anything I am available to help and answer.

[R0f03l]

Rafael, welcome to our forum. I too have been on imatinib for one year. I must say the first year was so difficult but many side effects of the medication are now subsiding. Please keep faith and stay in touch with this group. They have been more helpful to me than I could ever say. If we can allay any of your fears you will feel much better just from less anxiety. I have found that the members of our forum have just about heard it all and are willing to share their insights and information freely.

 

Thanks for the help I'm in this have some other questions to be reported.

 

abs.