new at this

reenie · Posted: Fri May 26, 2006 9:56 pm Post subject: new at this

After being told my husband had "possible early lymphoma" imagine our shock when it turned out to be stage iv pancreatic cancer. Who would have thought Lymphoma would have been good news. He just turned 59 and we have two kids (15 and 13). We are trying to take comfort in good things, like when we wake in the middle of the night, we talk until the meds kick in.
We missed a clinical trial by days, so we are going the gemcitabine, tarceva route If his numbers stay ok he'll have his 7th chemo on Wed. Our oncologist referred us to a pain management center If there is one in your area I recommend it. So far the Patch is better than pills, celiac plexus block worked great in test run, failed miserably in phenol attempt. Weight loss and constipation are big battles now. Unofficially Oncologist said rash from tarceva may mean it's doing some good- my husband says it's a cruel joke that you finally get back to your teenage body weight but you also get your teenage skin!
So, I've never posted anything before but I could use some help here.
There seems to be so much support for patient, spouse and children and NOTHING for teens- any suggestions? Thanks

cedar · Regular Joined: 01 Apr 2006 Posts: 17 Location: Canada

Hi, I don't know of any help for your teens, but I do understand this is a terrible thing for you all to be going through. And misdiagnosis seems to be a all too common thread. It makes the cancer diagnosis even more shocking. Thinking about you and your family. and sending best wishes your way.

reenie · Posted: Fri Jun 02, 2006 4:43 pm Post subject: reply to cedar

hi, Thanks so much for your reply. I know nothing really helps, but it is good to hear from those who "get it"- if one more well intentioned person tells me their cancer survival story I don't know what I'll do.
I read through your previous posts and am so sorry about your Dad, and all you had to go through. I hope as time passes you and your family will continue to heal.
I was thinking today that if this is as good as Sam gets, I'd be happy just to have him here with me. It is hard to get everything done and continue to work and take care of our kids but really it is my honor.
I really wish there was a good resource for my kids, but my new mantra is "I'm doing the best I can"
Thanks again for your support.

SueT · New User Joined: 05 Jun 2006 Posts: 3 Location: Australia

Hi I am new to the forum also, I was diagnosed with Pancreatic cancer over two years ago now. I had stage IV. I had to have 5 other organs removed including half my pancrease, full stomach, adrenal gland, spleed and 30 cm of my colon. I never thought I would get through. But with the grace of god and my loving and patient husband I have survived.!!! I had no need for chemo or radiation. It was a long hard road with now my weight and absorbtion of food being my biggest problem. It will be a hard slow recover but dont dispare, no matter how hard ... keep going and be strong. Personally I found meditation very helpful for me .
I am due to have my first yearly CT Scan on June 13!!! I am of course a little apprehensive. I am just about back to my normal weight. I am not back at work yet and dont know that I ever will. Cancer is something I think about every day, so I try to absorbe myself in things I enjoy. my dog training and quilting.
Keep your chin up Reenie!!!!!!
Sue T Wink

_________________
I am a surviver of Pancreatic Cancer

reenie · Posted: Tue Jun 06, 2006 5:41 am Post subject: Re: new at this

Hi Sue. Wow! We don't often hear news like yours, good luck on the 13th of June.
Sam's mother was a quilter so I have enjoyed the fruits of her labor in two ways!
I wish there was a surgical option for Sam but chemo is it.
There is a cool story of a survivor on www.pancreacita.org it is listed under the name Leaman.
good thoughts, reenie

Firefly · New User Joined: 07 Jun 2006 Posts: 4

Dear Reenie,I had 5 months on gemcitabene so I know the feeling. I developed a rash with the damned stuff as well but got great relief from a cream called Celestone-M 0.02%. in Australia it's put out by "Schering-Plough International" & the main ingredient is Betamethasone. Hope this is a help.

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