70 replies to this topic

[pammartin]

I had a long detailed informational post about this subject and it has disappeared upon posted.

I apologize, but it is late and I am overwhelmed.

Since Christmas I have been I what might be considered the perfect storm for my condition.  I contracted C Diff for three months and it was horrible.  Then although my white cells are healthy numbers, they are far from healthy for immune. Unknown to me I also contracted a virus in my heart during this battle.  After two VQ tests, numerous abnormal EKG's, CT scans, without contrast because I was I renal failure the local doctor decided to put me on steroids and thought that would clear up my problems  Instead it raced my heart, caused more distress and further damaged the pulmonary arteries.  I am seeing a lung specialist, heart, and pulmonary hypertension specialist within the next three weeks.  The arteries carrying blood flow to my lungs are very damaged, I was told if I were 30is I would be fitted with stomach pump and I might live to 50's.  I am 51, doesn't take much to do the math.

In all of this post, my main concern is to inform and request if you feel anything at all, please go to your doctor.  I can no longer take the Sprycel, Gleevec has been in some studies where it not only helps the CML but it also has a profound effect on the severe pulmonary hypertension.  Please, even if you think you are being a difficult patient, see your doctor.  I should have been removed from the Sprycel at least two months ago, damage would have occurred but not at the rate it has progressed.

I have not posted for a very long time because life has been pretty regular and I have been going along and getting things done.  In the words of the doctor, my life changed yesterday forever.  I am not to pick up a place from the table, I am not to walk over a few hundred yards, I have a cane ordered, any physical stress blocks blood to my lungs and I cough like I am a 30 year smoker.

Please see your doctors, be glad it is nothing, if it is, and never believe you do not have the right to seek help. I waited, thinking it was minor, had I went in early I may not have the severity of the problems and perhaps I would not be listening to my life changes once again, but this time there is really no self help.  If I try to exercise, the heart muscle overworks and eventually dies from trying to do it's job and cannot.

Thanks for reading and again, please seek help.  There are so many things that can go wrong with these meds, they save our lives and that is a positive aspect, but they attack other parts of our body.  I am removed from Sprycel forever. if I continue to take it my body will not tolerate the dosage, even a lower one past a few months.  In this case, it is what it is.

Take care and God bless

Pam

[pegetha]

Pam, words fail me.  I saw your post on the "Comment on the Discussion Boards" so I came here to read your more detailed post.  All I can say is that I'm so very sorry to read that you've had such a horribly difficult time, and have such a battle in front of you.  I'm glad that you have your faith and that it can be of comfort to you.  You will definitely be in my thoughts and prayers.  Thanks for thinking of others and for giving such good advice.  If you can, please keep us posted and let us know how you're doing.

{{{{{Hugs}}}}}

Pegetha

[pammartin]

Thanks! I eanyted to share how very important it is to see doctors, even when we things are going well, please be careful, what cures can also harm

[Trey]

Here is the FDA information about pulmonary arterial hypertension (PAH) and Sprycel:

http://www.fda.gov/D...y/ucm275155.htm

What was the virus you mentioned which also affected your heart?

[td1961]

Pam,

I am so sorry to hear of your misfortunes with sprycel. I had the same problems minus the infection and severity levels. Has your doctor given you a script for 02 yet? Once I started on nocturnal O2, my PAH went from pronounced to borderline. There are some new drugs out now to treat PAH such as Revatio, Flolan and Letairis (and others). Hopefully, your lung specialist will get you on one and start oxygen soon. I too had a hard time convincing my doctors that what I had was a real issue instead of just a nagging side effect. That's why FDA put the black box warning on sprycel because these nasty things can and DO happen to nice people! That's why I spout off every time I get a chance that IF you think you have a problem with shortness of breath, coughing, etc., and are on TKI's (especially sprycel) get it checked out sooner than later. I'm sure glad I did. Good luck and be well. TracyD

[hannibellemo]

Oh my goodness, Pam! Any one of those conditions would be very difficult to handle on its own, a triple whammy like that...it's no wonder you are reeling! Please let us know what your pulmonologist does for you and I pray it gives you some relief!

You are in my thoughts,

Pat

[Susan61]

HI Pam:  This is unbelievable, because I had you on my mind this morning and the past few days.  I was wondering why I had been thinking about you so much.  Was ready to send you a personal message.  I will still do that.

I just got out of the hospital on May 30 with a blood clot in my left leg.  This is the bad arthritic knee that I got all the Ortho Visc shots in a few months ago.  I was feeling a bit better after I got home, and then suddenly I experienced extreme weakness and dizziness.  I cannot drive or even walk out to my mailbox.  Gary is driving me wherever I have to go, or my daughter or friend.  I saw a cardiologist yesterday, and I am now going to be worked up for my heart.  He also heard something in my right carotid artery, therefore, I am going to go Wed for a Carotid Ultrasound.

     Lets keep each other in prayer.  The Power of Prayer is amazing if you have faith, and I know you do as well as myself.

    Yes, if something does not feel right then its not right.

God Bless and you are in my prayers

Susan

[jmoorhou]

Doctors are not always right with their predictions.  I read online a "damaged" arteries can heal (I think with exercise).  I just read online that arteries are more muscle than anything else.  I am a polio survivor whose left leg muscles were "paralyzed", with years of exercise my left leg is stronger than my right.  Don't give up yet.

[Marnie]

Pam. . .I've been thinking of you.  Sorry to hear all of this.  I'll send you an e-mail on your personal address later today.  I agree with jmoorhou. . .don't let the doc's words get you down.  They are not god, and there's a lot that they can't predict.

Marnie

[eeyoresusieq]

I was on sprycel and developed a leaky valve in my heart.  I immediately discontinued sprycel.  The assistant at the heart docs office told me they had another patient on sprycel with the same problem. My oncologist got really hateful with me and told me sprycel would not cause this problem.  I no longer go to that oncologist.   The new oncologist told me truthfully they don't know the long term side effects.  After stopping sprycel I no longer have the leaky valve.

[Melanie]

Pam, so sorry you're going through all this. Thank you for posting and giving us warning signs to look for and such good advice. Please take care and keep us updated. I'll be praying for you!

[pammartin]

Trey,

http://www.mayoclini...es/con-20034056

I have not visited specialist yet but general idea is bacteria or virus. I will know detailed info hopefully next Tuesday. Lung and heart with chemical stress test. Thanks

[jmoorhou]

My Onc warned me about this, is there a reason you were not on Gleevec (which I know can do the same thing).

[Pin]

Words are failing me Pam, this is just simply so awful to hear and I am just so sorry that you have been through so much

What symptoms did you have prior to the PAH? I imagine they were fairly vague, as is the problem when you don't know if you need to see the doctor or not

Have you discussed what drug they will be able to put you on?

[jmoorhou]

I hope you can tolerate Gleevec.  I do much too much researching on the Internet and from this article Gleevec causes no pleural effusion:  here is the link, name of article.....http://www.oncologyp...les/0802065.pdf

Review

First-line treatment of chronic myeloid leukemia: imatinib versus nilotinib and dasatinib Nicholas J. DiBella, MD, FACP

US Oncology and Rocky Mountain Cancer Centers, Aurora, CO

[pammartin]

Update: after intense testing at UPMC Presby, we at least have a plan of action. First the pulmonary hypertension needs addressesed immediately. The human heart pushes blood through the lungs at about a rate of 100, currently mine is nearing 1000. Far over safe limit. I had port installed today and began a short term medicine to begin treatment; to be released I have to transfer to IV med that has longer shelf life and can withstand room temps instead of constant refrigeration. Both meds have fairly ugly side effects and they will be treated as they reveal themselves. This is looking like another life time journey. In time, over the next several months if the pulmanary hypertension responds well to the IV port drugs, there is a possibility of changing to an oral drug, everything right now is filled with maybe or possibility. The other main issue is the leukemia goes without treatment because the med would potentially end my life with the severity of both diseases. We will be seeing our leukemia specialist within the month, but for now monitoring is all that can be done until the heart and lungs stabilize. Our lives change yet again but we are strong and so very thankful for our family and community base that supports us continually. Coming home is not something the doctors will discuss yet, so I guess I need to stop asking. The isolation is probably the hardest, but my immune is very compromised and visitors are asked to stay to immediate family, without any potential illness lurking. I miss everyone but having the guys home with the dogs also brings peace knowing everyone is safe and puppies are getting cuddled. Please keep Hollie in your thoughts, she somehow hurt her leg and hopefully she goes to see Dr Kim, Vet, tomorrow. One day at a time, that is all we are doing and all we need to do. Thanks everyone

[pammartin]

You are always in my thoughts Susan

[tazdad08]

Pam, Your story put a lump in my throat and chills all over my body. I am convinced that the TKI's take a huge toll on our bodies. I too am glad that they are there, but wish that they could work differently. God bless you and you are in my prayers. We are unable to see Gods plan, but its there. I have a million thoughts running through my fogged up mind, but the words are just not there.... Take it easy and keep praying.

Jimmy