28 replies to this topic

[hannibellemo]

http://www.reuters.c...E82F05S20120316

"The PPI drugs for heartburn and acid reflux were the most likely to alter the effectiveness and toxicity of Gleevec, researchers said. For the lung cancer drug Tarceva, steroids and PPIs were most likely to decrease efficacy, while certain antibiotics were most likely to increase toxicity."

I know when I had my liver toxicity with Gleevec I was taking off Prilosec immediately as well when my onc determined it could also have a negative effect on the liver.

Since I'm no longer taking Prilosec I wonder if I can give Gleevec another try?

Interesting, regardless.

Pat

[Susan61]

Hi:  I think it would be great if the Gleevec would work for you.  As for the PPI's, I must be different.  When I started on the Gleevec I wanted to die from the heartburn.  I started on NExium right after I went on the Gleevec.  Probably  within a few  weeks. Your supposed to take it on a empty stomach etc.  I take all my pills including Gleevec and Nexium every  morning with a decent breakfast all these years, and my Nexium has been fantastic and no problems with regard to interference with the Gleevec.  I do notice if I am not hungry in the morning, and I just grab some coffee and toast I do not get GERD,but I get Nausea.  I just know what works for me all these years.

It might be worth the try.  There are so many though who have not been able to handle all the other side effects of the Gleevec.  I just want to see you get something that you can handle well.

[hannibellemo]

Hi, Susan,

Other than the liver issue, a big one, I know, G was a walk in the park for me! The only really bothersome side effect was the foot cramps. It's probably just a pipe dream, but it's nice to think about!

Here I am today moaning and groaning about my disappointments and you have been dealing with this so much longer and with hardly a negative word. I take strength from your courage and perseverence - I would venture to say everone on here does.

Take care!

Pat

[GerryL]

Hi Pat,

It could be worth a try to go back to Gleevec if you want. I had issues with my liver storing up the cholesterol medication, which I don't think happens to everyone. I always try to be careful with anything that might impact the liver, including supplements. As for the muscle cramps, can I suggest you try celery seed supplements, works for me most of the time.

[Sneezy12]

The operative words in the article, are "could" and "may". There are no peer-reviewed scientific articles indicating that Gleevec reacts adversely with Omeprazole or Ciprofloxin. Frank   However, all 3 can cause Liver Toxicity. Frank

Message was edited by: Francis Farrell

[Susan61]

Hi Pat:  Thank You for the nice response.  I was reading what Gerry wrote, and is it possible you were on something for Chlolesterol that caused the liver functions to go up, and not the Gleevec.  I think it would be worth it to try again.  At least you know the liver rejuvenates itself again.  When I was first diagnosed, and I was on the Interferon and the Ara-C it made my liver functions rise.  Thats how I qualified for the clinical trial for the Gleevec back then. 

I guess I just look at how there was nothing but Gleevec for me back in 2000, but you will find something that works.

I do suffer with those darned foot cramps.  I keep forgetting to try the celery seed. 

Your a strong lady yourself, and with so much more to offer us you will get on track again.

Right now I need some strength myself.  I am going through Panic Attacks from a lot of other problems not even related to my CML.  Any Ideas are welcome!!

[Judy2]

Hi Susan,

I am sorry you are having panic attacks, they are the worst. One thing that helps me sometimes is if I lie in bed and put my arms over my head so that my arms are facing the wall, not the ceiling. Then take deep slow breaths through your nose. Putting your arms in this postion forces you to breath correctly and this can sometimes reduce the panic. The other thing I find helpful is to vent. Vent on this board, to friends, to a therapist. and if all else feel there are always drugs. Susan, I hope you feel better soon, it is very unlike you to complain. If there is anything I can do to help please let me know.

Hugs,

Judy

[Susan61]

Thanks Judy:  I try not to talk about things other than CML, but like I say we live with other problems as well.  Sometimes the other problems can make living with CML harder.  Just so everyone knows its not because of  my CML, its just struggling through with so many other things that I deal with on a daily basis.  Finances, insurance costs. I am trying to help out other family members with issues.  It just all piles up on me, and I guess thats how my body and mind handle it all.  I will suvive it, and I am very open to any suggestions.  I know I am not the only one who has or has had this problem.  It only started about 2 years ago, and I have had CML for 13.years. 

My husband has had cutbacks on the job, just like  many others.  This has just been a real bad week for me.  My Arthritis has been brutal.  I have it all over, especially in my neck and back and legs.  So I guess I am venting a little bit to release some frustrations.  Tomorrow is another day with new problems.  The key is to take one day at  a time, but how many of us really do that.  The support we give to one another on here is a real blessing, and I think thats how many of us get through it all.

I am always here to listen to anyone else who wants to vent also.  We all need to do that once in awhile.

[hannibellemo]

Susan,

I understand what you mean about things, other than CML getting to you! I found that Yoga breathing and relaxation poses really helped. The breath is so important in controlling anxiety and panic. I can tell when I am only chest breathing and making myself breathe properly really helps. I have a deck of yoga cards that I use to mix it up. You can get them on amazon or any good bookstore.

Right now about the only pose I can do is the sponge, but it's my favorite anyway! Lie on your back and starting from your toes contract and relax all the major muscle groups. Don't rush it! Then place both of your hand over your lower abdomen and breathe so your hands rise and fall with the breath. If you fall asleep during this mores the better.

Pat

[pamsouth]

Hi Susan,

Susan61 wrote:
Thanks Judy:  I try not to talk about things other than CML, but like I say we live with other problems as well.  Sometimes the other problems can make living with CML harder.  Just so everyone knows its not because of  my CML, its just struggling through with so many other things that I deal with on a daily basis.  Finances, insurance costs. I am trying to help out other family members with issues.  It just all piles up on me, and I guess thats how my body and mind handle it all.  I will suvive it, and I am very open to any suggestions.  I know I am not the only one who has or has had this problem.  It only started about 2 years ago, and I have had CML for 13.years.  
My husband has had cutbacks on the job, just like  many others.  This has just been a real bad week for me.  My Arthritis has been brutal.  I have it all over, especially in my neck and back and legs.  So I guess I am venting a little bit to release some frustrations.  Tomorrow is another day with new problems.  The key is to take one day at  a time, but how many of us really do that.  The support we give to one another on here is a real blessing, and I think thats how many of us get through it all.
I am always here to listen to anyone else who wants to vent also.  We all need to do that once in awhile.

I know what you mean about the finances, insurance, and helping family member issues, I got the same thing. 

I finally went to my new CML  Onc today at Indiana University.  The last time I was to my previous oncologist was in Oct 2011,  and Nov 2011 for a second consultation with my new CML Oncologist, at  Indiana University, he is an expert in CML!!.  My Blue Cross Ins. finally paid by Previous Onc for my visit back in Oct 2011..  However the appointment for November 2011 with new CML Onc at IU is still not paid and here it is Mar 19 2012.   last week I called Blue Cross insurance and they are going to reprocess the claim for the 4th time FOR IN UNIV..  It will take another 3 weeks, who knows, if it get turned down again, if so it will be because it was a consultation for a second opinion. Hopefully the office visit for today will get coded correctly and get paid the first time around.

Got all my labs done today, (here at Ind Univ) they took 5 vial of blood.  Since this is my first time to get labs here at Indiana University and they also interpret their own labs, The ONC Dr. wants me to come back in a month.  We need to get a Guideline started here at IND UNIV.  At my previous oncologist the vials of blood were sent from here in Indiana to New Jersey.  (today) The new oncologist  was just saying he had another new patient with the same problem, sending the PCR blood labs out of state and the results are all over the place.  I hope I don't have to have a BMB again.  He said sometimes when the Fish and PCR are very different, (he gave me more details) sometimes you can have a new mutation.  So it just depends on how today's labs and  the 1 next month come out.  He is very smart, he is with the Leukemia Specialist group.  He knows so much more then my old onc., I can tell by the informatin he shares.  My other once says "zelch"  I am excited to be at the number 1 cancer center of Indiana.

Next January I will be 65 years old Medicare age thank God, I won't have to worry about paying Doctor bills.   My husband is on Medicare his secondary Is Blue Cross of Micigan UAW retiree, and Medicare is so......... much better, even thought people complain about federal insurance.  I am counting down the months, weeks and days untill Medicare.  Actually I found out that if your birthday is Jan 1 you get to go back 1 month to Dec 1 to be on Medicare.

I tried to do some wall painting in 1 of the bedroom and steaming some floors, Also went to a massage class and gave my neighbor a massage.  Now my hands are all swelled up got an appointment with the Chiropractor and Physical Therapy this after, then a real massage from a great lady.

P.S My husband is retired electrician but  he working Part time as a greeter at Meijer,  It really helps us out as we had all these medical bills and was  helping are family.  We build a new house in 2007 and that was not so good ideal with the downfall of housing market.

Got to run, PamSouth

[Judy2]

Hi Susan,

I am glad you are venting about your issues, you are always there to help others and I'm hopeful others will be able to help you. Are you struggling to pay for your meds? If so, have you contacted the drug company? Have you taken advantage of the LLS grant. after all every little bit helps.  As far as talking about issues other then CML, we are more then just our CML and as you said sometimes the other issues can make living with CML harder. I think stress in our lives plays a big part in our medical health. Do you think your stress triggered your arthritic flair ? Susan, I know you always talk about how well you are doing, that you have had CML for 13 years, but how does dealing with 13 years of PCR tests, waiting for the results affect you? I've only been doing this since last spring and I have to think that 13 years of it would get extremely tiresome. I wish I had some answers for you, something profound to say. I guess what I can offer is my support, if you ever want to private message me I am here. I'm hoping tomorrow is a better day for  you.

Hugs,

Judy

[pamsouth]

Susan, Are you medicare yet?  I hears some people say that Medicare pays for massages.  That would maybe help your arthritis.

PamSouth

[pammartin]

Susan,

You listen and support all of us constantly, please post whatever you are feeling, we might not be able to provide support in person, but we sure can load you up with posts.  You are awesome and you are always one of the first ones who welcome a newbie, let alone offer advice and your own personal experiences.  I deal with panic attacks also, they are horrible.  The Xanax does take care of them, but then I sleep for several hours even on half a dose.  I hate that.  Used to take up to 4 a day and it didn't effect me, now my tolerance must be low from the TKI so it hits me hard.  Please share whatever you wish, even if it is not CML.  We are here for you, just as you have always been for us.

Take care

Pam

[Susan61]

Hi Judy:  You made a good point regarding the anticipation of waiting for PCR tests.  Yes, no matter how good I have done on my Gleevec, and I count my blessings when I hear others horror stories About how they felt on Gleevec I still go through the stress until I get my call to say that I am still PCRU.  ITs because we have no idea what will happen as the years go by.  TKI drugs were a new invention, and basically a miracle for so many of us who did not get a BMT.

We all would love to be able to see into the future as to what these drugs will do. 

     I do  plan on contacting some drug companies regarding assistance.  Just today my  husband tells me he needs a refill on one of his meds.  I am glad that we have the mailorder plan through my husbands insurance, but its still too much money to lay out.  Through the mailorder his 90day supply is $130.00.  I called my  local phcy just to see what they would charge if I broke it up into 30 pills at a time. He said $245.00 for a 30 day supply, and that laying out the money for the 90days at once is saving me money in the long run.

    Been trying to hold out a little bit, as my husband is trying to make some changes on the job to increase our income.  Like I said I have a lot on my plate, but again I thank everyone for all the help.

    Right now my best friend invited me over for lunch to help me relax, so I will be back on later.

[pammartin]

Susan,

Have a wonderful afternoon and a relaxing lunch.  Enjoy

Pam

[Susan61]

Hi Pam:  I am not on Medicare yet, and as long as my husband is carrying insurance on us I will not sign up for it due to having the extra money that would be taken out of my check each month to pay for the Medicare.

I have heard a lot of problems people have had with Medicare where they have to come up with money for a certain period of time before it gets picked up again.  I am not explaining it properly, because I do not understand what they refer to as the Donut Hole. I just have to keep doing what I am doing for now.

Hopefully my husband will be working for at least  another 6 years before he has to go on Medicare.  I am a little older than my husband.

[Susan61]

Hi:  I was on Zoloft when I was first diagnosed with CML, and I was not experiencing panic attacks back then it was just depression.  To some extent it did help me, but later on I felt nothing.  I could not even cry at a funeral for a family  member.  It was a horrible feeling.  I went off of it about 3 years ago I think, and have been fine until last year when all of this hit me.  I still think its all due to the struggling with everything just to survive these days, and everyone handles  their stress in different ways. 

I got out for a few hours today, and it did make me feel better.  I have also been concerned about my right leg that I had a blood clot in back in Feb. of 2011. It just hurts all the time.  I wonder if thats normal. I do not know if anyone else on here has dealt with a DVT at some point. 

[GerryL]

Hi Susan have a read of this http://patientblog.c...botic-syndrome/