Hi Marty....I know that you are doing the correct thing when it comes to avoiding germs. I carry the hand cleaner stuff with me at all times. I wish I could be more like you but I'm not. I will try to be better at it. I don't get colds with the exception of one last year. It didn't last long, so was happy about that. I wish they could find an answer for the pain that I'm feeling. It does wake me up...or prevent me from sleeping, but then I have the same issue with both hips and can't lay on them either. What a mess I am :>)...Once I'm up, my hips aren't hurting much, so that's tolerable, but the other pain, never leaves unless I take something for it. That only partially works and I usually put a heat pack on it. I'm never without it, but sometimes it is worse then others. Who knows? Thanks for your input though. You always give the best advice and I do listen. I hate it when people bring illness into my home. I don't understand why anyone would do that, but some people don't think. I do have one friend that has suffered from shingles for months and we talk on the phone, but she would never come to see me while she had them. They won't let me have the shot for Shingles, so I hope I never get them. She has had such a horrible time getting rid of them. Finally she found a medication (I believe from Germany) and had to pay around five hundred dollars for it, which the insurance wouldn't cover, but it did get rid of them. I will have to ask her about the name, etc. and put it on file in case others get it.
You and Shelly have a wonderful Holiday season. As always, I keep you in my prayers. Many hugs, 18's and blessings, Millie P.S. These virtual hugs can't hurt!!!!!!! ----- Original Message ----- From: Marty Gartenberg To: [email protected] Sent: Wednesday, December 18, 2013 9:09 PM Subject: Re: [CMLHope] Re: Tasigna and stomach issues proton pump inhib Hi Millie, Since the pain is on your left side so is your spleen. Have you noticed that it is swollen or is your abdomin extended?? From my experience if pain is comming from your spleen it would first have to be enlarged and the pain is more like an acheing rather then a sharp pain that wakes you up from a sleep. But, everyone is different. My spleen was very enlarged and it ached so since I was getting a bone marrow transplant it was surgically removed. The spleen is a part of your immune system so that is one of the reasons I became immuno comprimised. There were a few doctors that mentioned that once your spleen is removed then little spleens called auxiliary spleens start to develop in other parts of your body. And this may be so with me. I haven't had a cold in many years until this past week. I try to avoid any types of infections. I never open any doors with my bare hands. I never shake anyone's hand but rather fist them then use that anti bacterial gel or just wash my hands. I always use a paper towel to open any bathroom doors. I won't even hold onto any bannisters or even push an elevator button without using a tissue. I won't even turn on a fawcett in a pubilc bathroom but use a paper towel to open or close it. I guess that any colds are far in between and that is the way I like it. Most everyone living in my community knows they must not shake my hand but rather do a fist to fist and then I go wash my hands. It really works to avoid infections especially if you have any immunity problems. 18's, Marty I sure hope that you can be rid of your pain soon... I would like to wish you a very Merry Christmas and a painless New Year. 18's, Marty On Wed, Dec 18, 2013 at 1:22 AM, C.M. Houtz <[email protected]> wrote: Hi Peg, I've had pain in my left side for a couple of years and it keeps getting worse, and they tell me that nothing is wrong. Well, I've got news for them, it sure hurts like something is wrong. It wakes me at night and I have to get up as I can't tolerate the pain It's in the middle of my back, on the left side, and radiates around to the front. I have asked every doctor to help me, and none of them think it's a problem. Wish they had the pain, then they'd know what I'm talking about. Oh well, It is whatever it is, but wanted to share this with you. I'll talk to my Oncologist when I see him next time and have him check out the spleen again. It probably is what's causing it. Have a wonderful Holiday Season. Talk to you soon. Hugs and Blessings, Millie ----- Original Message ----- From: peg To: [email protected] Sent: Tuesday, December 17, 2013 10:06 AM Subject: Re: [CMLHope] Re: Tasigna and stomach issues proton pump inhib Hi Jeanie, So sorry that it has taken me this long to respond to you. I have been dealing with other cancer diagnoses beside CML...like CML wouldn't be enough, HA! However, when you mentioned pain in your side, you didn't say which side. I had pain in the right side until they removed my gall bladder, it seems that while I had gall stones, they were happy gall stones until Gleevec inflamed my gall bladder. I have had pain in my left side since the beginning of my diagnosis in 2010. Turns out it is my spleen, that is slightly enlarged. It was not enlarged enough that anyone would have thought it should have caused pain, but in my case even a slight enlargement presses on nerves around the bottom of my diaphragm causing anything from mild to acute pain. Not a GI problem at all. If you pain is left side, could be you have the same problem, I know I got patted on the knee and told it was not my spleen for the longest...they like to cookie cutter all of us and treat our symptoms and dosing like one size should be the same for all. Don't know yet if the Tasi is working. My last PCR was up from .05 to .14. I had been off of Sprycel for several weeks when we got the .05 and only on Tasi for three weeks when we got the .14 this month. The next couple months should tell. I hope this low dose is going to do it, so far this is the easiest of all the TKI. Seems with the latest diagnosis, CML may be the least of my problems, but it would be nice to catch a break. I am wishing you and everyone, whatever you believe and where ever you hang your star of faith, the brightest and most blessed holiday and miracles in the coming year. Fight on, and holiday hugs! peg On Thursday, December 5, 2013 3:04:06 PM UTC-8, Jeanie wrote: Thanks Peg, my problem was that the onc I had at the time, decided to put me back on Gleevec and Gleevec has quit working for me before. Here I was taking all these meds and my platelets and WBC were still too high. The doctor was giving me prilosec twice a day due to my complaining about the pain in my side. I never had heartburn. If I had, I could have understood why they were giving it to me. Hang in there with Tasi; it could be the one for you. Jeanie<3 In a message dated 12/2/2013 11:07:12 A.M. Eastern Standard Time, [email protected] writes: Hi Jeanie, You are right about the proton pump inhibitors...they are designed to work over a 24 hour period, meaning that there is no good time to take them around TKI's. All the TKI's carry a warning about this, because if the stomach acid is reduced too much the TKI will never reach full absorbtion. However, having said this, on Sprycel, I did have to take prilosec for the first week or so until I adjusted to taking Sprycel. The heartburn would have killed me. However, it was only for about a week or so. I have also had to do the same thing for a few days with Tasigna. It is a trade off, as the TKI may be impaired by it. However, I did find that once I adjusted to taking the TKI I no longer required prilosec except on the rare occasion. Good for you for standing your ground. Most docs never check the interaction checker far enough to see that things like proton pump inhibitors can affect absorption or other drugs that are liver enzyme inducers can affect metabolism of the TKI's. It pays for us to be patient active! Fight on, Peg On Tuesday, November 26, 2013 1:58:38 PM UTC-8, Jeanie wrote: Hi all and just wanted to say a few words about Prilosec. The Sprycel leaflet does say specifically do not take proton pump inhibitors. I had to fight with my doctors while in the hospital as they were giving me this twice a day and the meds I was on for CML were not working. I finally told the nurse when she brought them in that I would not be taking them anymore and showed her the leaflet. And I had no indigestion or anything just the pain in my right side that I always had. We are all different so maybe some people can take them without any side effects. Happy Thanksgiving Everyone, Jeanie<3 In a message dated 11/25/2013 3:58:03 P.M. Eastern Standard Time, [email protected] writes: Hi Peg and thank you. As for the Prilosec, all of my doctors and I have discussed it and feel that the benefits of me continuing to take it outweigh the risk. I don't take the prilosec with the TKIs, there's at least a couple of hours in between. Given my health history, it's an unfortunate necessity. I agree with you and have been battling my doctors since March regarding the whole "minimal effective dosing" issue. I see no need to take the maximum dose if the minimum is doing what it needs to be doing. At this point of my life, it's quality over quantity and if I can't actually live and enjoy my life, I really don't see much point. Being sick and living in the shadows isn't really my way. Suzanne On Monday, November 25, 2013 2:31:42 PM UTC-5, peg wrote: Hi Suzanne, Like you I have been on Gleevec (8 mos), Sprycel (3 yrs) and have just recently switched to a low dose Tasigna (200mg once daily). When on Sprycel I had esophageal spasms, where what I swallowed would not go down. This may be similar to what you are experiencing. I do use liquid Donnatal for this and other stomach problems, but I use it sparingly as it can inhibit the metabolism of Tasigna! There is not much point in taking a TKI, and suffering the side effects, if you take another drug for the side effects that renders the TKI useless! Which brings up a concern...your Prilosec. While I will use that only very occasionally, acid inhibitors like prilosec are contraindicated with TKI drugs as they impair the absorbtion. There is mounting evidence that too little stomach acid will result in too little absorbtion of the TKI's. As far as your oncologist wanting to increase your dose to the standard recommended dose, there is also growing evidence that dosage can be tailored to the actual need for each patient, but because CML is absolutely fatal without treatment and too low a dose can sometime lead to resistance, many oncologists are afraid to reduce the dose below the standard in the absence of absolute medical necessity. However, were medical necessity has prevailed many patients are being maintained fine on lower than standard dosing, myself included. Since you are already on a low dose, you might want to ask your oncologist to wait through at least 2 or 3 PCR's to see what your numbers are doing. They recommend at least 2 PCR's before making any changes as PCR's can fluctuate, so you would not ever want to make a change based on any one, but rather a trend of two or three, and they must be from the same lab!!! You cannot compare a PCR from one lab to that of another. It is like apples and oranges. However, if your numbers are good, there may be no need to put you on a higher dose. Just one school of thought...you may find others who disagree. I have just had such extreme side effects on TKI's that I have to hope and pray that low dosing will work. I PCR every month to monitor this. Like you I also have a complicated diagnosis, and balancing drugs and side effects is at the least challenging and sometimes depressing. I have had Multiple Sclerosis for 25 years, was diagnosed with CML and Melanoma at almost exactly the same time, almost four years ago, and this year have been diagnosed with an unrelated abdominal tumor and possible lung tumors. Through all the years of my MS I barely took any medication, but now pop handfuls of pills several times a day...very disheartening. I encourage you to find the lowest dose of everything that works for you and try to find a way to make it all work for your life. Some times for me this has taken a bit of life modification. I know first hand how tired and worn out you are...I get there too. Try to take one day at a time...and when that doesn't work, one hour at a time. Know that you are not in this alone. Fight on, Peg -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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