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

Her IRMT takes about 15 mins. It takes us longer to get there than it does for her treatment ;p
The staff there are really efficient and she rarely has to wait past her appointment time. This is quite welcome when compared to other health practitioners where she has had to wait up to an hour or more past her appointment time to be seen.

Having our daughter here has allowed me to start catching up on all of the "honey-dos" that I have been ignoring for the past several months.

Liz continues her radiation treatments and her spirits seem to have improved since our daughter arrived. Liz is eating more solid food and using the protein shakes less as her primary means of food. This week was the first week she had not lost weight from the week before and we are hoping that next week will show she actually gained a little. She has been walking more on her own (albeit very short distances) but she is at least now trying to get up and about each day. She is involved with crafts each day with our daughter and this definitely seems to be helping.

Her radiation treatments are scheduled to end the 30th of this month and we are waiting to see the medical oncologist to discuss the immunotherapy pill he mentioned prior to her starting the radiation treatment. Her next CT scan on the 30th will tell if she is ready to move on to immunotherapy.

Good morning, Bob. It is so good to read your words! I found that if I got up, took a quick shower, and got dressed my day was made even if that's all I could do. Hopefully, Liz's eating more will assist in her continued improvement.

Are you able to get out more for time to yourself? And your daughter too?

Merry, thanks for your concern. My daughter has been able to go kayaking, to the beach and to the lake in the short time she has been here. I have been able to concentrate on fixing up things around the house and get a chance to spend some time at work now that Liz is feeling better and the fact that my daughter is getting her to do more things for herself.

Hi Bob- It's been a while since we've talked. Your news is very positive in this reply and I hope that this new post still finds this to be true.

How is Liz's breathing?

Merry

Merry, actually things have been going so well, compared to only a few weeks ago, that I have been enjoying the simpler life.

Liz completed her palliative radiation treatment and will soon begin immunotherapy with Sotorasib (Lumakras). The genetic testing of her tumor revealed that it has a genetic mutation that can be targeted (KRAS p.G12C). Essentially, the Sotorasib turns off the reproductive ability of the cancer cell and specifically affects only those cells with the KRAS p.G12C mutation. The drug was approved for use last May and shows real promise. It increases longevity by an average of 7 months (4-13 mos range) in test patients and we are hoping Liz is on the high side of the curve. On the down side, there are several possible side effects and she has to take 8 of the pills each day. I am glad that we have good insurance as the cost is around $19,000 per month. She will have regular CT scans and blood work to monitor the efficacy of the drug.

Her breathing is improved and we are trying to wean her slowly off her dependence on constant oxygen. We had her in the pool a few days ago and plan to make it a more frequent event for the rest of the summer.

She has started eating in earnest again and actually gained 3 pounds this week alone. She is still in constant pain but her being more active will hopefully restore some muscle tone to help reduce the pain.

I’m glad they have identified the driver gene of her cancer. I’m sure you’re learning more about KRAS, but the inhibitors can be a game changer. Unfortunately Sotorasib hasn’t shown the same longevity that some other gene inhibitors have seen, but it’s a start. More research is needed to prevent the cancer from outsmarting the drugs. It’s a race against time for many of us.
Not everyone will experience all side effects, I’m hoping that she gets a break from feeling miserable and that the inhibitor is helping!
My cancer is from the ALK mutation, I also take an inhibitor, and it’s worked wonders for me, I absolutely know that I would not be here without it.
Take care, Lisa

Hi Bob- I am so very happy to hear that Liz is improving and even got in the pool! Best of all they can now control her treatment with a targeted medicine rather than taking a guess.

I have migraines and the new medications, for me and my insurance, $500/16 pills!

To help Liz's breathing have her try and slow it down and get into a comfortable rhythm. I do pursed-lipped breathing. There are many kinds of breathing that can be done but I find this the best. When she climbs stairs try and get her to keep breathing? If I'm in a hurry I hold my breath and wind up having to stop and pant instead of breathing slowly.

It's my turn next week for my 25th year CT scan! So I'll be traveling to MGH on Thursday but I will have my cell phone and can check messages.

Hope that it's not too hot for the pool!

Merry

Hi Bob- It's been a bit since we last spoke. I hope that things are still going well for your family. Is there anything further that I can help with?

Merry

Merry, thanks for the offer and concern. I have been quite because everything has been on a pretty even keel here. Liz did go to the Emergency Room Saturday due to difficulty breathing and pain. They do nothing complex over the weekend here and they finally pumped about 1 pint of fluid from her left lung this afternoon. She developed pneumonia which they also got under control and we hope that she gets released tomorrow.

She was prescribed Lumakras 960 mg daily on 7/16, however, due to miscommunication within the oncologist's office the prescription was not sent off until we visited him again on 8/2 and asked him when she would be receiving the new drug. Apparently they have a pharmacist within the office that was never notified of the prescription. The drug had to be approved by our insurance company (approved yesterday) and then sent from an approved specialty pharmacy. We have not been notified by the pharmacy that they have the new prescription and the oncologist's pharmacists did not come in today (and probably out again tomorrow) due to an emergency in her family over the weekend. I will be calling the oncologist's office again tomorrow and see if I can get hold of our "advocate" to see if he can find out what is going on. The number the advocate gave me to contact him is not the correct number.

Nothing worthwhile is ever easy it seems.........