Hi Marty, Wonderful Sunday. Hope everyone is good. Thanks for the input. Jeanie
Sent from my iPhone > On Oct 25, 2014, at 11:23 PM, Marty Gartenberg <[email protected]> wrote: > > Hi Jeanie, > > Just so you know: The reason they would keep replacing the bag containing the > Morphine was because any IV will grow germs so they simply replace it even if > you don't use it. Same for the IV itself, they usually start a new IV usually > every there days. > > 18's, > > Marty > >> On Sat, Oct 25, 2014 at 4:17 PM, icandoallttc via CMLHope >> <[email protected]> wrote: >> 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 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