About

Member has chosen to not make this information public.

Groups

Member not yet following any Groups.

Pages

Member not yet following any Pages.

Posts (18)

Thu, Jan 17 11:05am · Thymic Tumors in Cancer

Welcome @anotherfinemass to a group you probably didn't want to have to join. Good wishes as you start this journey to find your best treatment options. Where do you live?
There is a Facebook group (Thymic Carcinoma) I would highly recommend. Moderator is very knowledgable and members discuss their current treatments, drug side effects, surgical complications, current new drug trials, recommendations for oncologists, medical centers & surgeons – and most importantly – success and survival and living with this cancer.

Oct 7, 2018 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

Hi Gail,
I'm sorry your dad is struggling with sleep on top of all his other worries. Since he won't use the wedge can you just raise the head of his bed 4 inches or more? I also lost my right phrenic nerve in my surgery to remove my cancerous tumor. I absolutely couldn't breathe laying down and my oxygen SATs were proof. I was on oxygen for months afterwards, and quite a long time more just used it for sleeping, using a wedge as well. Months later a nurse suggested I have a test at the hospital to see if using a CPAP machine (as kind of a mini ventilator) would provide enough of a positive airway to hold my right lung open, allowing my left lung to work more efficiently. It did help tremendously and I now sleep with a CPAP and can lay down. No wedge.
My first chemo was also Taxol & Carboplatinen.
Taxol was given first and I had received about 10 minutes of the drug dripping at a slow rate when I had a severe anaphalactic reaction to the Taxol and absolutely couldn't breathe.  Four nurses immediately surrounded me, stopped the administration and ran saline to flush the line and increased my oxygen by several litres. I turned white as a sheet, then flushed bright red, then in five minutes  it was all over and I was returning back to normal.  I did NOT ever get more Taxol; but was switched the next round to Taxotere, which sounds similiar but is a very different drug and completed all future chemos with that combo instead. Best of luck navigating all the hurdles and roadblocks. Sending love and light to you all. Kristi

Sep 11, 2018 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

Hi Gail,
I had 7 weeks (35 sessions) of proton therapy radiation at MD Anderson in Houston, TX. It was just over 4 months after my sugical resection and after several months of weekly chemo. I suffered with extensive radiation burns and my sternum didn't fully fuse due to my radiation treatments. Surely it can be tough, but here I am 6 years later, and I can't say which treatment saved my life or if it was all combined. We had to fight the insurance company until the absolute final appeal to get my insurance to cover proton therapy, but the final "peer review" doctor felt it was my only hope and only option, so approved it. Best wishes to your family.

Sep 2, 2018 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

Hello Gail,
Yes, perplexing as there are no specific risk factors that you engage in to get awarded this cancer. "Luck" of the draw.
I am fortunate to have participated in so much prior to getting sick besides just work, such as travel, backpacking, bike riding trips, horses, raising children,…as I'm sure your dad has too in 85 years on earth. I am grateful to have a family who loves me as much as I love them and who plan some activities to include me, that while I'm sure they don't find them physically challenging, I certainly do. But I am glad to be along!
Give your dad a hug and my best. His fatigue is real, compounded by lots of emotional trauma, fear of the unknown he is entering, and the cocktails of chemo drugs and other chemicals surging through his veins. I didn't sleep at all the night of chemo due to the large steroid doses they pump into you. I opted out of the Benedryl portion of the cocktails. If he is having side effects be sure to bring it up with his doctor or the chemo nurse and they can talk to his doctor and adjust meds to his needs.
Best to you all on this journey and keep in touch.
Kristi

Sep 2, 2018 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

Hello Gail (@gailkattouf),
I am also living with Squamous Cell Thymic Carcinoma diagnosed in 2012. I had similar symptoms to your dad, and an x-ray suggested an anterior medialstinal mass, so a CT was done. I had invasion into blood vessels (brachychephalic, innominate & subclavian, and a blood clot from my left elbow to my sternum. My PET scan revealed cancerous lymph nodes in my left clavicle, so 30 nodes were removed. Like Allison Snow, I was given a terrible prognosis and projected short survival time, but also like her, here I am six years later and happy to be not only surviving, but enjoying life as it is now. Certainly my life is different from before with my health and breathing issues, but I cherish it daily.
Your dad may be feeling betrayed by his body for not notifying him earlier, I did; this is such a sneaky disease. Until is has wreaked havoc by invading many vessels, systems and organs you don't even realize it is there.
Following a less than successful surgery which sacrificed my right phrenic nerve, I had chemo, then later seven weeks of proton therapy radiation combined with chemo every 3rd week.
The first chemos I did were weekly – a combo of Carboplatinum and Taxotere. For me, the chemo was the easiest of the three treatments. I had some nausea that was fairly easy to control and didn't lose much weight.
Following initial quarterly rescans, I am now just having yearly CT scans. No active disease (NAD) to date; I can live with that.

Aug 23, 2018 · Cancer-Fighting Foods in Cancer

Thanks, but still no luck here.

Aug 23, 2018 · Cancer-Fighting Foods in Cancer

I am trying to join the webinar live, but having difficulties. Any suggestions?

Aug 22, 2018 · Cancer-Fighting Foods in Cancer

Yes, we are certainly almost in the same category of mythical animals. When were you diagnosed and how are you doing now? I have posted a bit of my cancer journey on another thread under thymic carcinoma.