Wife Just Diagnosed w/ ES SCLC - What Can We Expect?

Merry, we found out that the hold up is the insurance company wants a peer to peer discussion with the Radiologist to discuss the requested palliative radiation treatments before they decide on whether to approve them or not. Unfortunately for Liz, the doctor is away until next Tuesday, which means we will have lost last week, this week and next week before treatment will be scheduled, if at all. Our Human Resources VP has called the insurance company representative for my work place and has asked if they can expedite the approval, based on circumstances. I explained to the HR VP that this treatment is Liz's only option at this point, since the chemo failed to control the tumor growth. The insurance company was supposed to get back with us today, but like everything else lately, this too was an empty promise. I will be calling again tomorrow morning to get a status.

Our daughter's name is Vicky.

Just a quick reminder here. The first thing you have to learn is that when you receive a dX of any serious problem, and it is not your MD or especially a DO which gives the dX, no doctor on earth, or even at Mayo, will believe it. And if any part of it is based on genetics, just put the teakettle on the stove and listen to it prattle on. The current state of affairs in genetics is purely Hellish, with only a couple labs getting credit for good work. Even my own PCP at Samaritan refuses to request a full genome for me because he does not know how to cure whatever might show up on the monitor. oldkarl

Bob- I am so angry at this. It must have been a person who can't read who made this decison. Is there no one else in your doctor's office who can help also?

Vicky is a lovely name.

Good morning, Bob. I'm just checking in to see how things are going. Have there been any more news from the insurance co.? How is Liz? How are you?

Good morning Merry, et. al

A lot has happened since my last update. The head nurse at the Cancer Center called the insurance screening group and basically read them the riot act for delaying approval of Liz's palliative radiation treatment. The nurse was able to get approval over the phone last Friday and Liz went in for her "dry run" setup yesterday and received her first of 20 treatments this afternoon. She will receive direct radiation treatment to the tumor in her left lung each normal business day for the next 4 weeks. After the first 10 treatments they will rescan the tumor area and adjust the remaining treatments based on tumor size, etc. I requested and received a copy of the planning scan which shows the affected area, target area dose and potential dose due to scatter to surrounding areas. Due to the location of the tumor, Liz may receive some incidental damage to her esophagus and the nurse told me to keep an eye on this as they can prescribe liquid lidocaine to help reduce the pain, should it occur.

Liz has a fantastic handicap ramp now (built from the driveway to the house porch with a lot of help from my co-workers) and I purchased her a wheelchair to get her to and from doctor appointments.

Thanks for caring. Things are finally going the way one would expect them to......

Hi Bob- Yay for your nurse! I am very relieved to hear this wonderful news. Phew! I am guessing that Liz is receiving SBRT? If so she will feel tired but there shouldn't be any additional pain. She might get some burn on her skin so watch for that too. There might be special cream for it?

How are you doing?

Merry, her schedule shows IMRT (Intensity-Modulated Radiation Therapy). Reading up on IMRT shows that it is less likely to cause damage to surrounding (non-target) tissue and organs while delivering a higher target total dose. We will keep an eye out for skin burns at the receptor sites - thanks for the tip.

I am doing much better now that Liz is actually receiving treatment and we have the access issue resolved. With all the help we have been blessed with, we are both doing better today than even a week ago. Thanks for asking!!

Bob-I haven't heard from you in several days. How is Liz doing with her treatments? Are things going along as planned?

I'm thinking about you both.

Merry

It’s been a while since my last update and for that I apologize. Liz had another CT scan on her lungs Wednesday and the results were impressive. In late-May, before the palliative radiation treatment started, the tumor in her left lung had caused a total collapse of the lung. Yesterday, the scan showed that the tumor had shrunk to less than half its original size and approximately one-half of her left lung had re-expanded. She has another 10 days of IMRT and they will evaluate the next step(s) after that.

Liz is able to get up and move around by herself more now than in May. With the help of our daughter Victoria, she has started doing simple exercises to try and regain a little strength and duration. Liz still relies on her wheelchair to get around outside the house, but she did spend some time on the back porch last Saturday morning getting some fresh air and sunshine.

Her doctor has resumed prescribing low potency steroids and her appetite is slowly returning. Liz eats small amounts of solid food a few times a day now, however, the bulk of her nutrition still comes from protein shakes 2-3 times a day. We are hoping the protein shakes will become the backup to more substantial foods in the near future.

That is about it for now. Will try to update a little more often in the future.