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Anyone out there with Thymoma/Thymic Carcinoma

Cancer | Last Active: Sep 3, 2023 | Replies (136)

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@gailkattouf

The oncologist at last visit was sure my dad’s fatigue was chemo fatigue. Before chemo #4 his HgB was 8.8 and other labs were in line. We are 4 days out from chemo #4 and fatigue has hit him hard. Finding a comfortable position to sleep in at night has always been an issue since this diagnosis. He won’t use a wedge pillow and ends up having very splintered night time sleep. He says he feels full and hasn’t been able to eat or drink. I feel like with a left paralyzed phrenic nerve and hemidiaphram elevation it’s a compounded problem. I am also concerned that with the diaphragm elevation his small intestine is looping up toward the stomach into what was lung space or at least that’s what it looks like on x-ray. Has anyone else had feelings of fullness as if they can’t digest? He won’t drink cause he says the water isn’t going anywhere. Very frustrating for him and concerning for me. I think we may be getting fluids tomorrow and I was wondering if they ever give steroids to help get through fatigue and stimulate appetite?

Also at chemo #4, after the taxol drip was started, he had a severe reaction. He sat up and motioned that he could not breath and he turned bright red and then purple. They hit him with more benedryl and stopped the infusion for 30 min. It was quite alarming and resolved. Has any one experienced such reaction?

Needless to say, he is scared about his next 2 and final treatments. Lastly, they repeated a CT scan after 3rd chemo and the oncologist was comparing it to a PET scan 3.5 weeks prior to starting chemo. It revealed that the tumor was 2mmx 2mm larger. He said the tumor may have grown in between the PET scan and the start of chemo or that the dimensions of the PetScan aren’t as clear as what appears on the CT with contrast. He was not all that concerned and was pleased there was no new disease.

We rescan after 6th chemo and onc thinks it will be a petscan to see how “active” the tumor by how much glucose uptake it has. If tumor is stable and no new disease then we head to radiation. I am afraid to ask what happens if there is new disease or if the tumor grows...

Sorry for all the moving parts of this post and thank you for sharing your experiences...It is priceless.

Gail

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Replies to "The oncologist at last visit was sure my dad’s fatigue was chemo fatigue. Before chemo #4..."

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