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Deb says "Hi."


Deb

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Just introducing myself to this most special group:

I noticed swollen neck glands early in October and guessed maybe I had lymphoma. Did the initial "wait and see" before my first medical appointment towards the end of the month, after the harvest was pretty much done (southern WI). But just a couple of days after that appointment, I ended up lying down in the pasture instead of shoveling out the barn—just couldn't do it. And a day later, started coughing instead of breathing. The month of November included ER visits and hospitalization with a pulmonary embolism. Things weren't much better after discharge the end of the month, but I was disappointed the diagnosis I had chosen was not the one determined by the pathologist.

So then I was on numerous antibiotics that got rid of various respiratory infections while raising my INR's (on Warfarin) to new heights while I still couldn't stop coughing nor start breathing and my ankles totally disappeared. I was still trying to find homes for livestock, caged birds, dogs, and cats when I realized outdoor chores were no longer possible because the pain in one leg had become more than I could handle. With an INR near 6, the doctors didn't bother with an ultrasound of my leg for blood clots, instead focusing on what, for me, were incidentals. Two days later, the pain in my leg was too great even for lying around doing nothing so I was back again at the ER. Oops! 2 DVT's in the large veins of that leg. So I was inpatient again but no longer on Warfarin. Evidently, those mucous-producing cancer cells had clogged up my whole system with "snot" (no big surprise to those who know me) that Warfarin was no match for.

But it was found that I have the chromosome 21 nonsense mutation, finally got started on Tarceva, oxygen at home and, 2 1/2 weeks later, I'm doing very well. Even lost 20 pounds (fluid) over the Christmas holiday instead of my usual pattern of gaining 10 pounds of fat! No side effects from the Tarceva yet.

I'm sure I will be able to learn lots from all of you more experienced folks. So far, I've been amazed at how effective the medication has been for some—I had figured I only had around 3 months (tumor widespread throughout both lungs, in the pleurae, the pericardium, and lots of lymph nodes and probably elsewhere too). I feel so lucky to have been diagnosed when I could get Tarceva as a first line treatment.

And I have the most supportive friends (mostly within the women farmers community) and neighbors!!!

Anyone want a really sweet horse?

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Deb - welcome! It sounds like you really had a trip through the diagnosis process, but your attitude is definitely a big plus! Obviously you are one tough lady - I couldn't even imagine trying to do those chores feeling the way you must have. I am sure happy to hear those symptoms are under control and you are feeling better. I have not been on Tarceva, but there are many out there for whom it has been a wonder drug and it is wonderful that you have a mutation.

We many animal-loving members here, including horse lovers -- so who knows?

Please come back often and let us know how you are doing.

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Hi Deb

Welcome to this great site. I do not have experience with Tarceva. My combination was Cisplatin/Vinerolbine.

As for the horse....sure if I lived closer. I have 2 now but lots of room for more.

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Hello there Deb,

I'm glad you chose this board for support. Everyone is here for you with open hearts and virtual arms. I can feel your positive energy through your words and that's great! Feel free to browse the other boards too for information & inspiration. I hope you will keep posting in here so we can all jog along side you.

Hugs, hope & healing thoughts headed your way.

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  • 2 weeks later...

Welcome Deb. I wish I could have your horse. :) with my tiny yard he'd have to sleep in my livingroom.

Keep posted ok. Keep us updated on you!

Sent from my Samsung Galaxy Note 3 using Tapatalk

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I got to go with Katie on the horse .. No room and my 90 pound shephard would die of curiosity a first... she still can not figure out the deer we have roaming around out back and I live in the suburbs...

Tarceva has been a blessing for so many people here.. My wife was on it in the very early stages of its being available to the public and so much has changed over the years... Glad your doing as ok as you can be doing and not letting this thing Lung Cancer beat you up..... Keep up the spirits and the posting with us.. lots of info in other forums to read also..

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Hi to Everyone,

Thank you for all your kind thoughts.

I'm doing better every day—even able to do minimal outside chores and use a shovel on snow, or whatever, a couple of times. Not clear yet whether my improvement is due to just the return of a functioning circulatory system (Lovenox) or also to the effects of Tarceva. I've been on the latter over a month but have developed no side effects, i.e., no rash. No imaging scheduled for a few more weeks. Kind of worrisome.

But, on a brighter note, my horse is assured to be going to a good home on Friday, my remaining llamas are also going to be moving Friday, and some people are coming over Saturday to meet one of the dogs. Finding good homes for my dependents will make everything else easier.

Today, the sun is sparkling off the several inches of new snow and it really is very pretty (I dislike winter). Hope things are going reasonably well or better for everyone else.

Deb

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