Hi Marty, It's Sunday and a new week is almost here. I can't even imagine how bad those mouth sores must have hurt!!! I have had a few sores in my mouth but a little hot salt water usually takes care of them. I had the morphine drip years ago after my gall bladder surgery. Every time I would push it the place where my catheter was placed on my hand would hurt really bad so I wouldn't do it much. The nurse would come in to replace the bag and would tell me I sure didn't use much. I don't know why they kept replacing it when I wasn't using it. I finally asked the doctor to give me a pill and he gave me Percocet. It worked better than the drip. I did have some painful blister sores as side effects of gleevec. They came in sets if three and about the time one group would heal, another group would form. They were very painful and I only knew of one other cml friend that had them. I wonder if my side pain stems from the gall bladder surgery. I hope you are good tonight and wish you many blessings. Jeanie
Sent from my iPhone > On Sep 26, 2014, at 9:03 PM, Marty Gartenberg <[email protected]> wrote: > > Hi Jeanie, > > Pain especially severe pain is the worst thing that someone could ever go > through. I have been through a lot of severe pain in my life. Having my > spleen surgically removed was really bad but then I had some very severe gout > attacks, but even worse was two bouts with the shingles. However the > absolutly worst pain in my life were the terrible mouth sores when I went > through my bone marrow transplant. It hurt so badly that I was put on a > morphine drip that I was able to control with a button. The only thing that > it did was to make me hullicinate and throw up. It got so bad that I removed > the morphine tube and went on with the pain. I just decided to put my mind in > a different place. The transplant nurse gowned up and came into my bubble and > held my hand in her gloved hand and whispered through her mask three words > into my ear. I always remembered those three words to this day. She said > "It's only temporary" and even though I suffered greatly I would say those > words over and over again. They helped me deal with the pain, but it still > hurt and I wouldn't let my mind soak it in. > > 18's, > > Marty > >> On Fri, Sep 26, 2014 at 9:50 AM, ICANDOALLTTC via CMLHope >> <[email protected]> wrote: >> Hi Marty and so glad you are home; I pray that everything goes well. >> As we walk through this life, it seems pain is very much a part of it. I >> try to cope, and I remember Millie telling me that she would cope with the >> pain as well as she could. My sister has knee pain and I would tell Millie >> that she woke up each morning in pain; so I told her we could all join >> together in a prayer in the morning as we all woke up with pain. >> >> Coping with pain is hard because you don't know what is safe to take for the >> pain. As Sprycel is already a blood thinner, and most pain pills are blood >> thinners, you have to be careful that you don't get your blood too thin. I >> believe Millie had that problem, and she finally got a machine that would >> tell her how thin her blood was. However, as my platelets are high, I >> probably don't need to worry about the blood being too thin. Those with low >> platelets would have to watch it carefully. >> >> I was taking Tramadol for pain and it helped some. I learned recently that >> it has been put on controlled drug list. My doctor never told me this drug >> could be addictive, so I took it at least once a day. Now I find out that >> it is addictive, and that you can't just go off of it. You have to cut down >> gradually as it affects the brain. If anyone is on this drug, google it and >> it will tell you all about it. >> >> I had my visit at Moffit yesterday; it was good news. My platelets are >> back in the normal range but still higher than I would like at 362k/ul. WBC >> were 7.75 k/ul and a little higher than I would like. My onc however was >> happy with them and said I could come back in 3 months. I told him about my >> jaw pain, and he said to have the dentist x-ray my jaw, so I will have that >> done soon; if the jaw is ok then the onc might want to do other test. The >> pain in my jaw is much better, but not all the way well. >> >> ANC was high; anyone know anything about this? >> Thanks Blessings, >> Jeanie<3 >> >> Here is a copy of my blood results for those that are interested: >> >> <jeaniebloodreportsept2014%20001.jpg> >> <jeaniebloodreport2%20001.jpg> >> >> >> >> In a message dated 9/23/2014 7:54:08 P.M. Eastern Daylight Time, >> [email protected] writes: >> Hi Jeannie and everyone else. >> >> I had my surgery today and just got back home. Hopefully everything >> went well but I won't know for sure until I get my dialysis tomorrow. >> >> I am still a bit woozy and starting to have more pain right now so I >> will continue this some other time. >> >> Jeannie, I just want to say how badly I feel that you have such pain. >> I hope that it gets better very soon. >> >> You see that this CML site is something that makes all of us really >> care for and about each other. We are actually just like a big loving >> family. Sometimes people that haven't experienced what we go through >> really have no idea of what we do go through. >> >> 18's to each and every one of us. Today starts the Jewish New Year and >> as such we are all hopefully written into the book of life. No matter >> who you may be no matter what your religious beliefs are I truly wish >> all of you a healthy life. >> >> I would personally like to thank everyone for all of their good >> thoughts and prayers that you are saying for me and to everyone else. >> >> 18's >> >> Marty >> >> On Tue, Sep 23, 2014 at 12:09 AM, Richard H <[email protected]> >> wrote: >> > I hope your Surgery goes well. >> > >> > My prayers are being lifted and as always 18's >> > >> > Richard H. >> > >> > On Monday, September 22, 2014 6:34:30 AM UTC-5, [email protected] wrote: >> >> >> >> Good Morning to you Marty, >> >> I sure hope your surgeries go well. I know you are a fighter and will get >> >> through it all with your faith and great warrior skills. >> >> I am fighting these high blood platelets and hope they are good on my >> >> visit to Moffitt Thur. I will let you know. >> >> As you know, they have gone out of whack on me three times now. I'll just >> >> fight on as usual. >> >> The pain in my side hurts more now than ever, pain meds don't seem to >> >> touch it. I deal with that everyday as with everything else. >> >> Time to get a flu shot. I take one yearly and it really helps me. >> >> Do you go back to PA ever now? >> >> You have a home there right? >> >> I am going to visit my baby daughter the end of this month. Just have to >> >> get my meds first. >> >> Well, Good luck on your surgeries; I am praying for you and all everyday. >> >> Love and Blessings, >> >> Jeanie<3 >> >> >> >> In a message dated 9/22/2014 7:00:15 A.M. Eastern Daylight Time, >> >> [email protected] writes: >> >> >> >> Beth, I am very pleased to be hearing that your doing so well. May it >> >> even get better fro you and everyone else. >> >> >> >> I just had another round of surgery on my arm to correct the narrowing >> >> in my blood vessels for the fistula in order to get my dialysis. This >> >> was done eleven days ago and it still isn't working right so I am now >> >> scheduled for another round of surgery this tuesday. This will be the >> >> tenth and it seems that this has been going on every two months so I >> >> really need that kidney transplant as soon as possible but I still >> >> haven't heard anything as when. >> >> >> >> I can really use everyones prayers on this, and I thank you for them. >> >> >> >> 18's, >> >> >> >> Marty >> >> >> >> On Sun, Sep 21, 2014 at 11:17 PM, bkbarney via CMLHope >> >> <[email protected]> wrote: >> >> > HI all. Just wanted to offer my experiece to the mix. I have been on >> >> > sprycel >> >> > for 4 years in November, with some breaks for back/neck surgeries >> >> > unrelated. >> >> > In the beginning, I did get very mild PE which showed up on a chest xray >> >> > that was done as a pre-surgery clearance test. It was not major. My doc >> >> > did >> >> > but me on furosimide 20 mgs plus potassium daily..and stated I needed to >> >> > stay ahead of any possible swelling side effects if possible. I eat a >> >> > low >> >> > sodium diet and take this med religiously in the a.m....sprycel before >> >> > bedtime. I am blessed to have no further issues with any PE for the last >> >> > 3.5 >> >> > years. So, in my experience, I believe a daily diuretic with the sprycel >> >> > has >> >> > truly helped me. I am also on a low dose which maintains me at barely >> >> > detectable to undetectable......40 mgs. I am truly blessed. Hope all is >> >> > well >> >> > with everyone. I miss you all. Still navigating back issues so not on >> >> > line >> >> > much at all these days...but keep everyone in my thoughts and prayers. >> >> > My >> >> > CML is in good control and I count my blessings....including all of >> >> > you...take good care. warm regards, a 18 >> >> > s.....to all of you.... ( marty still prayng for a transplant..for >> >> > you..) >> >> > Beth >> >> > >> >> > >> >> > -----Original Message----- >> >> > From: LearnToBallroomDanceOnline.com <[email protected]> >> >> > To: cmlhope <[email protected]>; pkshaub <[email protected]> >> >> > Sent: Fri, Sep 19, 2014 11:23 am >> >> > Subject: Re: [CMLHope] Re: Sprycel side effects >> >> > >> >> > Hi Peter, >> >> > >> >> > While it is true that many develop PE while on Sprycel; the upside is >> >> > that >> >> > the PE often coincides with PCRU! >> >> > >> >> > And unfortunately diuretics do not reduce the fluid that actually is in >> >> > the >> >> > sac that surrounds your lungs. For me it usually takes a break from >> >> > Sprycel; >> >> > I know that many people avoid Sprycel because of this risk, but to me, >> >> > the >> >> > risk of pleural effusion is less of a risk that the ones that come with >> >> > Tasigna's Black Box Warning. >> >> > >> >> > My PE's have been more of an inconvenience at this point and fortunately >> >> > clear quickly. >> >> > >> >> > Best to you all, >> >> > Michele >> >> > >> >> > On Fri, Sep 19, 2014 at 4:54 AM, Peter <[email protected]> wrote: >> >> >> >> >> >> From what I have read here and elsewhere, it seems to me that Sprycel >> >> >> will >> >> >> definitely cause PE, it is only a question of WHEN, not IF. >> >> >> For this reason, I have avoided this drug like the plague. Currently, >> >> >> Tasigna is keeping at a 3.2 log reduction, which is a sub-optimal >> >> >> response. >> >> >> My doctor keeps telling me, that PE is "easily controlled with >> >> >> diuretics". >> >> >> However, I have not heard this from anybody else. >> >> >> Does anyone here know anything about the use of diuretics to control >> >> >> PE? >> >> >> >> >> >> Peter >> >> >> >> >> >> >> >> >> On Monday, September 8, 2014 11:33:33 PM UTC-4, grammie wrote: >> >> >>> >> >> >>> Have been reading the reports of various CMLers having side effects >> >> >>> from >> >> >>> the various TKIs. Jut wanted to weigh in with my husband's latest >> >> >>> experiences. He was short-winded and family doc ordered a chest X-ray >> >> >>> which >> >> >>> revealed some effusion. We reported this to Dr Talpaz (his CML >> >> >>> specialist) >> >> >>> and Dr T wanted him to have an echogram which we were able to do >> >> >>> locally >> >> >>> with his regular cardiologist. Dr T said to quit taking Sprycel >> >> >>> immediately >> >> >>> and not to continue until he and the cardio conferred. As of now, he >> >> >>> will >> >> >>> have another echo in a week to see if there is any change one way or >> >> >>> the >> >> >>> other. He has an appointment with Dr Talpaz in Michigan the middle of >> >> >>> October and it sounds like they are going to have him stay off Sprycel >> >> >>> until >> >> >>> at least then. It's kind of scary being off the medication that you >> >> >>> know is >> >> >>> saving your life. But Dr T is not concerned. Don't know where this >> >> >>> is >> >> >>> going next. All part of the journey. Continue to pray for all the >> >> >>> warriors >> >> >>> out there. >> >> >>> Thank you for your input. >> >> >>> Joyce in IL >> >> >> >> >> >> -- >> >> >> -- >> >> >> [CMLHope] >> >> >> A support group of http://cmlhope.com >> >> >> ------------------------------------------------- >> >> >> >> >> >> You received this message because you are subscribed to the Google >> >> >> Groups >> >> >> "CMLHope" group. >> >> >> To post to this group, send email to [email protected] >> >> >> To unsubscribe from this group, send email to >> >> >> [email protected] >> >> >> For more options, visit this group at >> >> >> http://groups.google.com/group/CMLHope >> >> >> --- >> >> >> You received this message because you are subscribed to the Google >> >> >> Groups >> >> >> "CMLHope" group. >> >> >> To unsubscribe from this group and stop receiving emails from it, send >> >> >> an >> >> >> email to [email protected]. >> >> >> For more options, visit https://groups.google.com/d/optout. >> >> > >> >> > >> 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