Re: [CMLHope] Re: Tasigna and stomach issues proton pump inhib

Hi Peg and thanks so much for the update. My gallbladder was removed many years ago, and I had a cat scan done that showed no enlargement of my spleen. It is my right side under my ribs. I will be having more test during the new year and hopefully they can find the cause. Good luck on eve

Re: [CMLHope] Re: Tasigna and stomach issues proton pump inhib

> my prayers. > > Many hugs, 18's and blessings, > Millie > P.S. These virtual hugs can't hurt!!! > > - Original Message - > *From:* Marty Gartenberg > *To:* cmlhope@googlegroups.com > *Sent:* Wednesday, December 18, 2013 9:09 PM > *Subject:* Re: [CMLHop

Re: [CMLHope] Re: Tasigna and stomach issues proton pump inhib

an't hurt!!! - Original Message - From: Marty Gartenberg To: cmlhope@googlegroups.com 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 sple

Re: [CMLHope] Re: Tasigna and stomach issues proton pump inhib

--- > *From:* peg > *To:* cmlhope@googlegroups.com > *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 > deali

Re: [CMLHope] Re: Tasigna and stomach issues proton pump inhib

ps.com 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,

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 g

Re: [CMLHope] Re: Tasigna and stomach issues proton pump inhib

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

Re: [CMLHope] Re: Tasigna and stomach issues

Hello To all, Unfortunately I am one of the ones that can't play with my doses. I cut back on my Sprycel for fear of PE and my platelets started going up. I went back to my regular dose and they came down but not enough as far as I'm concerned. I have been through this before and it ends u

Re: [CMLHope] Re: Tasigna and stomach issues proton pump inhib

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 abs

[CMLHope] Re: Tasigna and stomach issues

Hi Suzanne, Sorry it took me a bit to respond, getting through the holiday this week kicked my butt. It is difficult to just let things go because I am no longer up to the task! It feels like failure to me, and is a bit scarey too...like Dicken's ghost of "christmas future". I couldn't agr

Re: [CMLHope] Re: Tasigna and stomach issues proton pump inhib

oliday,..we are blessed to have you as part of our community as well..so happiness and joy to you too! Beth -Original Message- From: ICANDOALLTTC To: cmlhope Sent: Tue, Nov 26, 2013 3:58 pm Subject: Re: [CMLHope] Re: Tasigna and stomach issues proton pump inhib Hi all and just wanted to

Re: [CMLHope] Re: Tasigna and stomach issues proton pump inhib

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 to

[CMLHope] Re: Tasigna and stomach issues

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

[CMLHope] Re: Tasigna and stomach issues

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

Re: [CMLHope] Re: Tasigna treatment interruption trial

Hi Jeanie, Well, at least your not suffering from the gout, you have enough on your shoulders without having the gout. Also, those large pills were the Hydroxurea. 18's, Marty On Sat, Nov 16, 2013 at 5:29 PM, wrote: > Hi Marty and good advice. My dad and brother had terrible gout and it >

Re: [CMLHope] Re: Tasigna treatment interruption trial

Hi Greenie, About beer, my daughter loves the stuff and she's as healthy as a horse. Me, however, I get a headache from any type but I do love a good glass of wine or a martini once in a while. Gout could run in families as my dad and brother had it. Moderation in all things is my motto.

Re: [CMLHope] Re: Tasigna treatment interruption trial

Hi Marty and good advice. My dad and brother had terrible gout and it would put them to bed for a while. Yes I was put on Allopurinol and Hydroxurea when I was first dx in 2004 They brought me these huge pills when I was in the hospital and I could barely get them down. I kept asking the nu

Re: [CMLHope] Re: Tasigna treatment interruption trial

Hi Marty, What's funny is I just started drinking a few beers last month. Where we lived before in and apartment complex for a little over two years I quit drinking beer. We lived on the first floor near the lake and every time I would drink a beer I would get a headache, and I would only

Re: [CMLHope] Re: Tasigna treatment interruption trial

Hi Greenie, I hate to burst your bubble but even drinking beer even for four or five times a month is no good for your kidneys if you have any signs of the gout. All that happens is uric acid crystals build up in your joints. In your case your big toe, but it could be anyware in any joint in your

Re: [CMLHope] Re: Tasigna treatment interruption trial

Hi Patrick, I purchased my first Corvette in 1961 and I was 23 yrs. old. In 1962 I purchased my 1962, then in 1963 I purchased a blue one and I didn't like the performance so I purchased another one red this time with the big engine. Then 1966 I purchased a 427 c.u. 450 h.p. that they only m

Re: [CMLHope] Re: Tasigna treatment interruption trial

Thank you Marty for you input. As for the beer I may only have 4 to 5 in a month, I don't drink any wine or the hard stuff, alcohol gives me a headache. No pain killers either. I had prednosone many years ago and it make me very sick. Gleevec and that drug does not work well with me. T

Re: [CMLHope] Re: Tasigna treatment interruption trial

Greenie, LOL - yep it looks like a Caddy feels like a Caddy and does 0-60 in 3.9 seconds. It's the same supercharged 6.2 liter as the Vette ZR-1. 556 horses and an incredible 551 lb-ft. of torque. Pretty sure it would boost adrenaline levels! Personally my excitement and expenditure levels match

Re: [CMLHope] Re: Tasigna treatment interruption trial

Hi Greenie, Please forgive me, all of this time I thought you were a female. Anyway, Your gout is caused by a build up of uric acid, and that in itself is bad for your kidneys. That is why I suggested to have your uric acid checked out by a part of the blood work you will be getting. Usually if y

Re: [CMLHope] Re: Tasigna treatment interruption trial

It's me again Marty, I forgot to add that I'm getting gout in my big toe on my left foot. I've had it for a while. I don't know if that may add to the uric acid in my system. Could that add to my increase levels? The Doctor gave me and order to get the us renal sonogram so I'll call and

Re: [CMLHope] Re: Tasigna treatment interruption trial

Hi Marty, I was hoping that you would read my email. After I get the blood work in 2 weeks and if the results are the same or higher he wants me to get a us renal sonogram. I am not diabetic but my BUN was 19, their range is 7 - 22 mg/dl. so I'm not over the top yet. I don't know what my

Re: [CMLHope] Re: Tasigna treatment interruption trial

Patrick, that's more H.P. then a stock Corvette. A stock Corvette I think has 450 H.P. The ZR1 Corvette has 638 supercharged H.P. The CTS I think is supercharger also. I've been getting 1/2 c.c. of testosterone shots every two weeks for over 20 years, I wonder if that could be making my l

Re: [CMLHope] Re: Tasigna treatment interruption trial

, November 09, 2013 5:39 PM Subject: Re: [CMLHope] Re: Tasigna treatment interruption trial Hi Patrick, We do have a reverse osmosis filter on our sink. I am going to use Lemon juice and put a little in each bottle that I drink to see if that helps. Boy, when you get hooked on something like

Re: [CMLHope] Re: Tasigna treatment interruption trial

Hi Greenie, If you are not diabetic then start drinking Cranberry juice. So that you know when you age your kidneys become less active and your creatinine levels do rise somewhat. When you have the blood test be sure that they also check your BUN and Uric acid levels. As you already know I am on

Re: [CMLHope] Re: Tasigna treatment interruption trial

'14 Vette? Aaarughh Aaarughh Aaarughh might be time to consider a "coupe" CTS-V ? Don't know that you can improve a test in 2 weeks but drinking *water* is important for kidney health. Patrick On Saturday, November 9, 2013 4:39:38 PM UTC-6, greeni

Re: [CMLHope] Re: Tasigna treatment interruption trial

iginal Message - From: myvet...@aol.com To: cmlhope@googlegroups.com Sent: Saturday, November 09, 2013 5:39 PM Subject: Re: [CMLHope] Re: Tasigna treatment interruption trial Hi Patrick, We do have a reverse osmosis filter on our sink. I am going to use Lemon juice and put a

Re: [CMLHope] Re: Tasigna treatment interruption trial

Hi Patrick, We do have a reverse osmosis filter on our sink. I am going to use Lemon juice and put a little in each bottle that I drink to see if that helps. Boy, when you get hooked on something like a can of coke it's hard to stop but I'll do it. If I drink more water do you think that

Re: [CMLHope] Re: Tasigna treatment interruption trial

Hey Greenie, I'm thinking you need to try some better tasting water. If you don't like the idea of bottled water a reverse osmosis filter will give you great tasting, clean water. Even if they sort of resemble a high-school science project under the sink. Patrick On Saturday, November 9, 2013

[CMLHope] Re: Tasigna treatment interruption trial

Peter, I'm pretty sure that's what MR4.5 means. And yes your Tasigna is supplied for the length of the study. - A year's worth if things go well and up to five years worth at the other extreme. Of course you might need to leave the study if you need to do something else. Obiciously I'm just a c

Re: [CMLHope] Re: Tasigna treatment interruption trial

Hi Group, I had my 6 month blood work performed last Wed. and my results came back O. K. put my creatinine levels were high again. Back in 1997 I found some of my blood work and the results were 1.3. Over the years and being on Gleevec for over 13 years my levels range between 1.2 to 1.4 a

[CMLHope] Re: Tasigna treatment interruption trial

Thanks, Patrick, very useful information! I am just wondering... one qualification is, to have achieved MR4.5. What does MR4.5 mean in plain English? I am guessing that it means a 4.5 log reduction, but I am not sure. The other thing is, what happens if after 2 years you lose MMR? Do they

[CMLHope] Re: Tasigna causing manboobs?

It's a possibility. Check out http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3039175/ "Endocrine side effects of broad-acting kinase inhibitors" . Click om the "Go to" link on right edge of the left column. Select "HYPOGONADISM AND OVARIAN INSUFFICIENCY". Man boob are gynecomastia . Patrick On Th

Re: [CMLHope] Re: Tasigna and Boils

Thanks Jeanie. On Wednesday, 20 March 2013 19:20:47 UTC+2, Jeanie wrote: > > Hi group. I had awful boils in gleevec. They came in groups if three and > were very painful. Only one other person shared my complaint if boils at > the time. I suffered through them and they finally went away. Used ho

Re: [CMLHope] Re: Tasigna and Boils

Hi group. I had awful boils in gleevec. They came in groups if three and were very painful. Only one other person shared my complaint if boils at the time. I suffered through them and they finally went away. Used hot compresses and antibiotic. Good luck Jeanie Sent from my iPhone On Mar 19, 2

[CMLHope] Re: Tasigna and Boils

Hi Kelly I googled "Tasigna and Boils" and came across a blog post from sometime back and Jeanie advised you, I think she had the same. I am currently on Tasigna 600mg/day and have been and I am struggling with boils and it seems now infected sweat glands. Any advice would be most helpful. T

[CMLHope] Re: Tasigna

Marwan: Contact Novartis, the drug company who makes Gleevec. They have a program to help people like you. Thank you, and I do hope you find help. Love, Suzieq -- [CMLHope] A support group of http://cmlhope.com - You received this message becau

[CMLHope] Re: Tasigna

Kelly: I'm very happy for you, hon! I know how hard you have struggled with CML & finding one of the drugs to fight it! I know how happy I was to finally see that "None Detected" the first time and then to start seeing it again, then again, & now for the fourth time in a row! 2 1/2 years straight

RE: [CMLHope] Re: Tasigna Users

ssage- From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of kellyelise Sent: Tuesday, April 10, 2012 10:05 AM To: CMLHope Subject: [CMLHope] Re: Tasigna Users Thank you for your response, Susan. Quite frankly, it feels as though these drugs are sucking the life right out of

Re: [CMLHope] Re: Tasigna Users

From: kellyelise To: CMLHope Sent: Tue, Apr 10, 2012 1:05 pm Subject: [CMLHope] Re: Tasigna Users Thank you for your response, Susan. Quite frankly, it feels as though these drugs are sucking the life right out of me. I hate them with a passion. Good for you for managing so long without them.

[CMLHope] Re: Tasigna Users

Thank you for your response, Susan. Quite frankly, it feels as though these drugs are sucking the life right out of me. I hate them with a passion. Good for you for managing so long without them. I am sorry you suffered such awful side effects to the Gleevec. The insurance issue is a huge problem f

Re: [CMLHope] Re: Tasigna

Hi Kelly, Of course it is a good thing. By the way, to really set your mind at ease; your not dying from this. Stay out of the way of speeding busses however...You just go on and live your life and enjoy it. Now you really know the meaning of 18's 18's Kelly Marty On Tue, Nov 1, 2011 at 7:43 P

[CMLHope] Re: Tasigna

Thank you Marty and Susan, You have provided me with some reliefwow, Susan, 200mg every other day? That is great!! I am so glad you are doing well with that. I understand the translocation of the chromosomes which results in the Philadelphia chromosome but I didn't really understand what it me

[CMLHope] Re: Tasigna Scheduling

I take Tasigna in the morning WITH coffee (milk, one sugar) every day for 18 months and my counts have never been better. The patient lit says to take "with water" but every med says that. I just wait an hour in the morning before eating anything. I usually eat breakfast at work anyway. It's more

Re: [CMLHope] Re: tasigna/itch

Hi Daniel, I just remembered how bad my head itched. I thought I had lice it itched so bad. I think adding some yogurt to your diet could help. I eat it daily and my rash is gone, at least for a while. Blessings, Jeanie<3 In a message dated 1/25/2010 5:28:08 P.M. Pacific Standard Time, dan

[CMLHope] Re: tasigna/itch

thanks nancy, the issues seem to be resolving like you suggest. best, daniel On Jan 25, 9:09 am, ncha...@aol.com wrote: > I have been on Tasigna since June, 2008.  In the early days, I did  have a > very itchy scalp and some hairloss.  The both stopped after a short  time, > however.  I think it

[CMLHope] Re: Tasigna

Hi Norm, You really are a fighter.as are we all. I know that we all have issues when it comes to CML and have to deal with so many things. I am glad that you're doing okay. I had to go off of Tasigna right after going on it, but after a month the doctor put me on half a dose and then moved

[CMLHope] Re: Tasigna

Hi Norm, I like your email so much. It is very encouraging. Livia --- On Mon, 10/6/08, Norm <[EMAIL PROTECTED]> wrote: From: Norm <[EMAIL PROTECTED]> Subject: [CMLHope] Re: Tasigna To: "CMLHope" Date: Monday, October 6, 2008, 3:34 PM Hello to all, I am a phase 1 participa

[CMLHope] Re: Tasigna

Hi Norm, this means so much to me; to hear from one who has had their ups and downs on Tasigna; I know what I can expect. This is my 14th day, so I have a long way to go. I was dx aml when they switched me to Tasigna. I had a terrible pain in my tummy on the second day, and my lipase was high.

[CMLHope] Re: Tasigna

Hello to all, I am a phase 1 participant in the AMN107 or as it is now called Tasigna trial,. I was in blast when I started the trial and wasnt feeling all that well at the time. Gleevec wasnt working for me anymore and I went off of it before starting the trial. Now I was one sick puppy sorta bar

[CMLHope] Re: Tasigna

Hi NancyMy Onc. is from this area which is about 40 miles north of Allentown. His main office is in Hazelton, PA. He's been my doctor since I had my breast removed about 15 years ago. I do trust him and he is on top of things all of the time. I feel very fortunate that my doctors keep in

[CMLHope] Re: Tasigna

Jeanie, Hi! I've been on Tasigna since July. I take 800 mg. (400 twice a day). I just got the results of my first FISH and PCR (done by peripheral blood) since starting Tasigna. I was totally UNDETECTABLE! Wasn't that great? I was taken off Gleevec because of fluid retention and acc

[CMLHope] Re: Tasigna

Hi Millie, nowadays we have these options of medications and they're still find other options and many trials are beeing performed. So, that's the way it is. I feel confident that you'll be ok with tasigna. Keep going, Ricardo. On 6/13/08, C.M. Houtz <[EMAIL PROTECTED]> wrote: > > *Hi Everyone,

[CMLHope] Re: Tasigna

Hello Millie Let me give you a brief overview- - I am 57 and had CML 6 years. I was on 400 mg gleevec for 5 of those years. I have been PCRU 5 years. I had to switch to tasigna because of side effects on gleevec. I have been on 400 mg tasigna since Dec. 27. They gave me a good physical, did an

[CMLHope] Re: Tasigna hope?

I just remembered! Check out the website www.clinicaltrials.gov. I was told this is a very good website to check out what's going on where. Type 'CML' into the search engine, and then at the top of the page, go to the 'Maps' section. You can click on a country, or a state, and it will tell you

[CMLHope] Re: Tasigna hope?

Sprycel was approved last summer in the US by the FDA for patients who have become resistant to Gleevec. Tasigna has been submitted to the FDA seeking approval. On Feb 7, 3:39 pm, "purplegiggle" <[EMAIL PROTECTED]> wrote: > Thanks Chrissy! I'll look into it. I wish you the best...let me know >

[CMLHope] Re: Tasigna hope?

Thanks Chrissy! I'll look into it. I wish you the best...let me know how things go too. :) On Feb 7, 3:15 pm, "Chrissy" <[EMAIL PROTECTED]> wrote: > Depending on where you live, perhaps your mother would be eligible for > a clinical trial. That's what I am going to do as I am in the same > sit

[CMLHope] Re: Tasigna hope?

Depending on where you live, perhaps your mother would be eligible for a clinical trial. That's what I am going to do as I am in the same situation as your mother. I will be starting Tasigna, which Anjana explained to me is the same as Nilotinib (which is the name I use when referring to the dru