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

Bob- Oh dear, this is not something that you wanted to hear. Palliative care will help Liz stay as pain-free and as peaceful as possible while seeing if the new medication works. Do you have a name for it so I can do some research for you?

Do you still have hospice coming in once or twice a week? They are wonderful and will help you through this transitional time, no matter the outcome.

Please know that I think about you and Liz so much and I hope that this new pill can do what the chemo didn't.

When will she begin radiation?

Merry

Hi Bob- How are things going today? Has the first radiation been scheduled?

Merry

Good morning Merry, sorry about the delay in my response.
We still do not have a schedule for her palliative lung treatment. They may be waiting approval from out insurance company. She is pretty much bed-ridden at this time. The pain in her back and hips has increased steadily over the past several weeks and requires morphine pills morning and night with oxycodone at least once a day as a supplement. She was also prescribed Valium to help her remain calm. She can still walk very short distances, but requires additional oxygen during the process and for about 15-30 mins after during recovery.
She developed a severe rash that started on her buttocks and spread rapidly over her back, legs and stomach. Our family doctor prescribed hydrocortisone 2.5% and ketoconazole 2% which worked great. They gave us two small tubes (60 g total) of each and when we tried to get them refilled, they told us that these were supposed to be 30 day supplies. We used them in 3 days due to the large area we had to cover. We ended up using OTC hydrocortisone 1% and an antibiotic cream to finish getting rid of the rash.

Good morning Bob- I'm sorry to hear that Liz is pretty much bedridden. I was hoping that her lung treatment had started. She is probably very tired from her meds-all put together they pretty much pack a powerful punch. Which she needs at this point. Are you staying home now or do you have someone taking care of her before your daughter arrives?

I know that you have recently attained power of attorney for health care. Do you have other legal papers settled? I know that this is a nosy question, but I want to make sure that everything runs smoothly for both of you.

I hope that you are well and taking a break every now and then. I realize that this is an awful time for you, but if you need to walk away for 15 minutes if you need it and if you can.

You are in my thoughts. You are not alone, Bob. All of us on Connect are here for your support.

Merry, our best friend's mom is staying with us until our daughter arrives in June. Linda has been through extended illness and end of life care with several of her family members over the years. She is a real blessing that allows me to do the things away from home that need to get done without worrying if Liz needs something while I am away.

We are still waiting for the Radiologist to set a treatment start date and I will be asking tomorrow what the hold up is now. It will be a week since the planning CT and we should be getting some word by now.....

The Power of Attorney has been accepted by everyone that we have provided it to, so I think the legal stuff is covered.

Thanks for caring!!!!

Good morning Merry, sorry about the delay in my response.
We still do not have a schedule for her palliative lung treatment. They may be waiting approval from out insurance company. She is pretty much bed-ridden at this time. The pain in her back and hips has increased steadily over the past several weeks and requires morphine pills morning and night with oxycodone at least once a day as a supplement. She was also prescribed Valium to help her remain calm. She can still walk very short distances, but requires additional oxygen during the process and for about 15-30 mins after during recovery.
She developed a severe rash that started on her buttocks and spread rapidly over her back, legs and stomach. Our family doctor prescribed hydrocortisone 2.5% and ketoconazole 2% which worked great. They gave us two small tubes (60 g total) of each and when we tried to get them refilled, they told us that these were supposed to be 30 day supplies. We used them in 3 days due to the large area we had to cover. We ended up using OTC hydrocortisone 1% and an antibiotic cream to finish getting rid of the rash.

I am with Merry to ask you to make sure all legal papers in order. Wills, trusts, bequests...Sorry but now is the time to make totally sure of this while Liz is "of sound mind". I think you understand what I mean. I am following you and Liz here and pray for the best.

Good morning Bob- I really hope that you get answers about the hold-up of Liz's treatment. You are very patient to wait a whole week to find out. I wouldn't. Don't be afraid to push.

I am so happy that Linda is staying with you and helping Liz. What a gift. I'm sure that you are soaking up every bit of information you can from her. And I'm sure that you are counting the days until your daughter will be home for the summer. What is her name?

Not to end on a sour note but please think about what Dee recommends too. All of these, if they are applicable are very necessary at some point. If Liz is drugged up or unconscious it will be too late for her to make decisions- in the eyes of the law especially.

I'm sure that you will, but please let me know, when you can, about the hold-up. From where I am sitting no word in a week is inexcusable.

When we can only use words it's often difficult to know exactly how to respond. Perhaps I could offer more? Do you think that Linda and I should talk so that we are on the same page?

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.