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Cathy53's Message Board Messages

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Yes I was on it several years ago (2007, 2008).  I thought it was fine, a great alternative to Chemo.  However, in 2008 I developed a tumor in my sternum and had to have surgery. The surgeon stated it was already disintegrating, so I believe the Tarceva was responsible for that.  My oncologist though insisted it was now time for traditional chemo. 

I have been cancer-free since 2008. 

Hi - My dad has had a GIST tumor removed about 1-2 yrs ago and the surgery involved removing part of the stomach. He was then put on Gleevac orally - this is the only chemo drug available for this type of cancer.  He doesn't tolerate this pill very well but takes it "most of the time".  His biggest problem is throwing up after eating - doesn't happen all the time, or even every day.  It does not seem to follow any type of pattern & can occur morning, noon, or dinner.  He is keeping a food diary to see if there is a specific food or ingredients that cause this.  The only solution the doctor came up with is taking an anti-nausea med which he doesn't want to do.  He is a lot of cardiac meds so doesn't want any interference.   I personally feel that meat is the biggest culprit, but he has thrown up egg salad too. 

Has this problem occured with any of you, or do you know of anyone who is on this med??  Open to all suggestions.

Thanks

Has anyone heard anything (good or bad) about using electrical stimulation if you have cancer.  The last time I was in rehab for my back, the therapist refused to use the electrical stim on me, saying she read it was contraindicated for cancer pts.  Then the next time a different therapist gave me the unit to try at home.  I am conflicted about using it without knowing if it will harm me (even though it makes my back feel so much better).  I haven't been able to find anything on the web about using it.  Please respond if you can direct me to some literature on it.  Thanks

My Dad, age 79 with an extensive cardiac hx, just had surgery done on a 5cm GIST tumor - spindle cell & responsive to c-kit.  The oncologist recommend oral Gleevec for 2 yrs.  Has anyone had anything like this? Can anyone tell me what side effects you've experienced with this drug. 

He has a f/u appt next month where I assume the doctor will discuss the med, side effects (which look to be extensive).  They did not give us the staging info, or what the survivor rate is. 

On Sep 01, 2010 5:00 AM SmittysLove wrote:

I have read, with sympathy and amazement, how some of you have had to struggle without help from family and friends.

It's funny, but many family members, in my husband's family anyway, just don't grasp the situation. I don't expect help from them, but I would like some cooperation in certain specific areas, with my husband.. their brother or uncle. Talk about scatter, otherwise wonderful people just don't want to face up to what is happening. Would you believe, I still get family thinking it's all going to be fine. Smitty will go on as usual.. isn't it wonderful!! .. would be if it were true.

I now understand all those here who have posted about how clueless and in denial family have been.  I get more support from my family, and so does my husband. My family is ready and anxious to help us. My husband's family seems to think everything is going to be hunky dory, and if not.. well it's "not their resposibility".

Even my husband has remarked, "Sorry, my family is useless".  They don't mean to be, they don't realize how they are letting him down.  Just clueless and don't really care that they are, heads deep down in the sand.

Like this isn't hard enough for those of us on the front lines.

Sorry, needed to vent.

The only support I get is a ride to a medical visit when I'm not allowed to drive myself, and of course, when d/c from the hospital.  I live alone, still maintain my own yardwork.

Would be nice if any one of my male cousins would volunteer to cut my grass, or do minor chores (like helping me rescreen by screen door). I have 3 who could do it(ages 21, 29, 42) but they never volunteer.  I have a very wealthy aunt who hasnt offered me a dime for groceries, when at times I haven't been able to shop for groceries due to lack of funds.  The only person who does things is my Dad, but his age (79) and his own health problems has made it increasingly difficult for him to do much anymore.

So I sympathize and just needed to vent also. It sucks to be sick, geting older, and alone.  My real friends are up North and I'm stuck in Florida where I have absolutely no friends at all after 7 yrs of living here.  Not a good time to have Cancer lurking in the background ready to pounce whenever it pleases. 

I had 12 cycles of Alimpta with no side effects except tiredness, but I seem to be tired anyway with or without chemo.  Mine was only a 10-min infusion ev. 3 wks, taken as a maintenance drug.  My doctor wanted me on it for 1-2 yrs, but let me stop after all my scans came back "normal".

I have Lung Ca with mets to brain and sternal lymph node but have been cancer-free since my last surgery 9/08, which was followed by radiation and chemo with taxol and carbo (but became allergic to Carbo, switched to Gemzaar).  My last dose of Alimpta was 3/18/10. 

I don't know if Alimpta works or not, since I was free of tumors when started on it.  According to my doc this is the best maintenance drug for lung cancer.  I was also on Tarceva before the sternal tumor appeared, so I guess Tarceva didn't work for me either. 

 

 

Has anyone taken this drug Alimta yet?

I have stage 4 lung Ca with mets to brain 1/07 and sternal tumor removed 9/08- I have been through radiation twice already.  I was on taxol/carbo, then taxol/gemzaar chemo through 5/09 (stopped due to an ambigious CT scan result).  A f/u PET scan & bronchoscopy just showed inflammation and no s/o cancer.  I will be f/u with my radiation oncol. next week and a 6 mo. MRI of the brain.  I am just starting to feel normal again.  My hair is finally starting to show s/o regrowth and my eyebrows and eyelashes are finally returning.  I am not tired anymore.  Now, my doctor wants to start me on this maintenace drug which is IV ev. 3 wks, a B12 shot needed ev. mo., prescription folic acid and corticosteroid and dealing with all the usual s/e of chemotherapy, in addition to worrying about bone marrow suppression.  I know this all sounds petty, but I wonder if this is going to be worth it - I want to feel normal again, and if I agree to this tx I will not be feeling good at all.  The most depressing thought is she wants me on this indefinitely - I don't think I can stand that thought.  Please give me your thoughts, and if anyone has taken this drug please let me know how it affected you.   Thanks for your thoughts and support.  I have not been depressed until I found out about this new tx today. 

 

On 3/23/2009 CodyJames14 wrote:

Hi,

This is not really my comfort zone, I am usually pretty much to myself, but I would love to some people to talk with that have an understanderstanding of what I am going through. My Dad was diagnosed in Nov of 2008 with stage IV small cell lung cancer tht spread to the bone, in particular the spine.  He just finished some pretty intense radiation and is just started his first chemo session. I have spent some time on the internet and everything I read is tht the survival rate is a year or less. Is that true? Do you all know of any good books for him to keep his spirits up? I would love some feedback. Thanks


I was dx with Stage 4 lung cancer in 1/07 - they removed a brain tumor, then found it was from the lung - they also removed part of my lung.  I had radiation to my head and took an oral chemotherapy agent.  I was doing fine for 20 mos. and then had a setback with a sternal lymph node that was cancerous - more surgery, more radiation, and I am still in IV chemotherapy.  I recently asked my oncologist what my prognosis is - she replied "it's  2 years, but you already passed that".  She considers me one of her miracles.  So my advice is - stay positive, and ask your doctor what the prognosis is, not what you read.  There are many books out there, but I found I do not like to read them - I read my novels and other things instead.  A lot of cancer patients, myself included, don't really want to read about the cancer - and I am a nurse!.  Some people turn to religion.  Whatever he likes to do, encourage him to do it, not give up and live life to the fullest he is capable of doing.  Good Luck.

depends on where he had the radiation - I suspect it was somewhere in the sternum/chest area.  I finished my radiation therapy on 12/2 - my throat is getting better every day - they told me 2 wks and it is about that time period now.  It still hurts a little bit - especially bread, toast, etc.  I found it was harder to drink liquids that eat food.  I still chew the food very well before I swallow - it helps.  I found the "magic mouthwash" useless - it leaves a gross taste in your mouth that does not go well with anything else you ingest.  Good luck.
Thanks for your input.  Unfortunately, I am not a hat person, and look quite terrible in hats. I also got sick of trying to tie scarves, which I'm not good at, and wearing turbans (which I got from the TLC catalog).  For me, the wig is the only thing that looks decent on me, but it is very hot now in Florida and wigs are way too hot to be wearing on a regular basis.  In fact, anything covering your whole head is too hot!  So I can only keep hoping that one day the top of my head will fill in with hair. 
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About Cathy53

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Lung Cancer

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