spokanemom
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Dear Susie,
Thank you so much for sharing your wonderful news. It is such a help to hear these success stories and it gives me hope.
Best Wishes,
VictoriaDear Celia,
Thank you so much for sharing your wonderful survivor story. It gives me hope for my husband!
Best Wishes,
VictoriaHI Jack & Kasia,
I am so sorry that you and your family are going through this. My husband was 42 when he was diagnosed last November and our children were 13 and 10.Our insurance did cover testing by Foundation One, but they required pre-authorization and a pretty substantial rational from his oncologist about why she deemed it necessary for treatment. Foundation One tried to test two different samples from my husband’s resected tumor, but both failed and our insurance was never billed.
We also had the same quandary about starting treatment before receiving a second opinion, but fortunately, we were able to squeeze in a second-opinion visit just before chemo started. We did have to fly in/out on the same day to fit it in though. I do not know how large the tumor board was that reviewed your case, but it might give you some comfort that more than one doctor looked at your case. I would try and use Monday to get a specific date scheduled with a second-opinion surgeon, and then you can share that with your oncologist on Tuesday. Share with the surgeon’s office your dilemma about starting chemo and see what they have to say.
Best Wishes,
VictoriaDear Silentk,
I am so sorry that you and your family are going through this. I was once in a position where someone I cared deeply for refused counseling and I found tremendous relief attending counseling myself. The counselor suggested I tell my loved one that I was having trouble processing/handling the situation, and it would help me if they attended a session with me. That was successful and led to private sessions for my loved one. Even if my loved one refused counseling, I benefited from attending by myself.I am so glad that it sounds like you have an amazing social worker. Please continue to reach out to her, and your children, and be honest with what your needs are. It sounds like a great idea to walk away when you need sanity breaks. This sounds like such a scary time for all of you and I am glad you have discovered this board.
Best Wishes,
Victoria
PS – I hope you have been spared the horrible air quality that we have experienced here in SpokaneYea for the CC news!!! I am so sorry for the uncertainty around the MDS news. You have been though so much and I know what a fighter you are. It is tough to wait to figure out what is going on. Hang in there.
VictoriaDear Gail,
Please know that I have been keeping you and your family in my thoughts and prayers this past month.
Best Wishes,
VictoriaDear Marion,
You have personally made the world a better place. Thank you so much for all the work you have put into this organization. Please take care of yourself and feel all of the love we are sending to you.
Best Wishes,
VictoriaWe had the same issue with my husband’s sample. They went ahead and tried to test it, but it failed in the final round and we got no results. They did not charge us.
Dear Jonas,
I am so sorry for the loss you and your family have experienced. I am so glad Myrna was surrounded by her loved ones.
VictoriaMore great news! His MRI from a couple weeks ago was also clear. In fact, it looked even better than the MRI from April, with no intrahepatic dilation at all. He is still NED. He finished his 7th round of gemzar/cisplatin on Thursday and is scheduled to start 6 weeks of IMRT radiation and 5FU chemo on July 17th. His doc said that this is like a climb up Mt. Everest, we are almost done, but this last part is the hardest.
He handled the gem/cis pretty well, especially after they started giving him additional IV anti-nausea meds and fluids on the 4th day after each infusion starting on the 5th round. That really helped keep the nausea away and his appetite up. He is back to his pre-surgery weight.
We have had a number of people ask why we are continuing with radiation if he is NED. Four different doctors (in addition to the hospital’s liver board) all recommended we do chemo AND radiation if he could tolerate it, so this has been the plan ever since he came out of surgery without clear margins and one positive regional lymph node. It actually is a tough call, because he feels so good now and it is tempting to just get on with our lives and enjoy the rest of summer without being hooked up to a chemo pump and popping in for radiation Mon-Fri for 6 weeks. We feel comfortable with this decision for us though. He will finish radiation 1 week before he has to go back to work full-time. He is a professor.
Thank you so much for sharing the details of your journey so far. I appreciate the info and feel that it helps me with my journey as well. I am so glad your husband has responded well to his treatments so far. Congrats on the Whipple!!
