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Sep 1, 2018 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

Those are the same two drugs I took. What I can tell you is that I was started at 100% strength I lost all my hair after the 2nd treatment. I struggled with nausea and they just gave me very effective drugs for that I didn't eat but I didn't really lose much weight. Pain was an issue so my levels were reduced. I didn't feel anybetter but I didn't get worse. As far as this decease goes I considered it worked.I did not get another recurrence for 3 yrs used a couple different drugs (when I asked why not the same dr.s said they thought! it doesn't work as well the second time) anyway didn't matter half way thru it was clear it was not working so we discontinued. We expected some explosion of growth and a dire outcome but instead it stop growing.
so now just waiting This may sound like a sob story but it really is not

I am alive iget to see my grandchildren every week I even saw 2 be born since I got my initial DX of 6 months to live 9 years of living
Yes has there been a lot of suffering I suppose physical ,mental and emotional. more to share but I have a gransdson to put to bed so that's all I want to get into

Aug 18, 2018 · Anyone here dealing with peripheral neuropathy? in Neuropathy

sorry my mind was all over the place with the last note. I was in a hurry and had to end it quickly.. But yes am going in for more tests to determine if the cancer is back and if it is back is it a different cancer than last time. My cancer insurance will not pay anything if it a repeat of the same cancer. So I am in a strange position……if it is cancer, I am hoping for a new pathology? I think?? for two reasons .1) if new cancer I get paid by my regular cancer and get to use the new cancer insurance 2)they have no more proven treatments for Thymoma/Thymic. So maybe future might be brighter on the other side of the fence hahahahahahahahahaha you know that old saying, AND there is always the chance it is a benign nodule and is really nothing at all. I have had my share of false positives AND I ALWAYS HAVE HOPE AND GOD AND MY GARDEN

Aug 18, 2018 · Anyone here dealing with peripheral neuropathy? in Neuropathy

Thank you John for your well wishes this will be the first time away from my lungs ! so that is good news !!!! I have some growth around my lungs but they didn't seem as concerned about those growths . Another good news is (????) is that looks like a new pathology?! is that it seems to be a new pathology so our cancer insurance will kick in after dealing with that once I know to keep every receipt.

It is kind of like Aflac They pay your bills but you fight for every penny. before anyone asks it is from work and he has worked there for 47 I don't know if they at 50 years he gets a new F150 if they don't change that too

Also I don't think the nerves get any better the more times you are wait. I actually remember asking someone that once. I can tel you the spelling gets worse! I am doing laundry, cleaning dusting , ,baby sat last night anything and everything to stay busy, working in my garden…works best for me because that brings me closer to God ……oh forgot……eating chocolate LOL

The thing that helps the least is people saying "it may be nothing" AAUUGG!!!!!!! I already know that!! but they are doing the best they can ..
Our friends love us and do the best they can that is why this is a good place we talk to people that know and feel it in their heart.

Aug 16, 2018 · Anyone here dealing with peripheral neuropathy? in Neuropathy

Yes I try to stay aware of being hydrated I am finished with chemo for now… don't want to sound negative but we quit it half way thru because it was not working. On top of that, my last 3 mouth scan, showed some nodes at the head of my pancreas I go back 21st-22nd for MRIs and consult. It is never just one thing is it lol

Aug 13, 2018 · Paralyzed Diaphragm in Lung Health

@colleenyoung I got looking back at all the posts and I saw diaphragmatic breathing is this different from breathing from your diaphragm as singers do? and as I mentioned here somewhere my diaphragm is paralyzed (right) also phrenic nerve

Aug 13, 2018 · Paralyzed Diaphragm in Lung Health

yes I don't have apple …..have android/google play store

Aug 13, 2018 · Living with Neuropathy - Welcome to the group in Neuropathy

@marinelastef ,
Don't worry !!! I met some incredible people there, patients and teachers/Dr.s, nurses etc. All I meant by that was that a lot of the physical therapy was aimed more for back and neck and at that time my back was not a problem (boy how times change) Overall was a very good experience. For me it was expensive I don't know how it is set up now but then? 30 days out patient = 30 days in hotel

I really hope it helps you out! No one deserves to be in pain all the time.

remember I was there several years ago but then…the did physical and occupational therapy, they had an exercise program, they dealt with mental issues tied to pain, breath control to learn to not focus on pain, they had the neatest computer game to learn this! group sessions (small groups) to learn from each other. I can't remember for sure but seems to me there was a work book to go thru and to reference when we got home.

Good Luck
Allison