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MyWifeSCLC

Wife Diagnosed w/ LS-SCLC stage 3

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Thx for checking Michelle ... my password would not work and I was unable to reset it until today.  Highly irritating but dealt with it.

Ginabeth is doing well, except for her throat.  She is eating better but continues to have swallowing issues.  Her recent hospital stay was a doozy (discharged a week ago).  She had blood system sepsis, a kidney infection and also an esophagus fungus issue, if I read the discharge papers correctly.  Her blood pressure was extremely low and she was feeling very faint which is why she was admitted to the hospital.  As usual, her WBC, RBC and platelets were a mess.  She received IVs almost the entire time she was in the hospital.  Also was tested for Covid twice.  Anyone admitted has to have the test and if anyone on the floor gets a positive test, then everyone on the floor has to have the test.  Fortunately, she did not test positive either time.

Blood pressure meds were changed for the 4th time and actually changed again (5th time) yesterday by her Primary care physician.  3 new meds were added, mainly to deal with the fungus and esophagus issue.  The docs are indicating this is all related to chemo and radiation.  I had begun to wonder if I was not keeping the house clean enough or something.

She will have a camera put down her throat on Monday to take a look around and take samples if needed.  They had thought about putting in a "balloon" to open up the constricted area but decided against it due to perforation risk.  The surgeon said it was too soon after radiation to do that even though her last radiation was on April 7th.  My gut feel is that her esophagus does need to be opened up and they are just biding their time until the risk of perforation is low.

Since her PET scan was interrupted by her stay in the hospital, she will have it next Tuesday.  Next Friday, her brain irradiation setup takes place which consist of a brain CT and then a face mask, etc.  My understanding is it will take several days after the setup to come up with the appropriate irradiation plan.  Since the radiation will be 10 days, my guess is that it will be 2 weeks on a Monday to start the hippocampus-avoidance PCI.  Recurring theme on this forum ... hurry up and wait!

I have started working on various summaries of Ginabeth's first-line treatment to place in separate posts which may be easier for folks searching rather than read through this entire post.  My thoughts for summaries are as follows:  Treatment and symptoms/side effects.  I may wait until the brain HA-PCI is completed since it is considered part of first-line treatment.

Steve

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Good news, bad news: PET scan indicates her primary cancer has no activity ... Unfortunately we were on the way to the hospital when the good news was given to us. Pneumonia is the verdict. This is the first hospital visit where she had a high temp and shortness of breath. I had to call an ambulance because she couldn't get to the truck which is also a first. We were thinking coronavirus but tested negative for that.

She missed her brain radiation CT and set up today but turns out the machine broke so they called to set it up for next week. I just had to laugh at this. I told them I would call when she got out of the hospital.

 Steve

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Update: Ginabeth got home from hospital yesterday after bout with pneumonia. Even being careful you can get pneumonia by getting germs in the airway. Gotta continue to wash everything well.

7 days this time instead of the usual 5 days. The blood counts weren't as bad as usual, although they did give her blood. Hopefully this is a trend toward blood counts being consistently better.

While in hospital we talked with her thoracic radiation oncologist about throat pain. She said many factors determine why the soreness continues and is so bad. Apparently Ginabeth is on the end of the spectrum of patients that have it worse. Have to get her to eat and drink more which is an ongoing battle.

Having to postpone brain irradiation is really problematic in that the risk of brain mets is going up. She is scheduled for the CT and planning setup on May 29 and then it takes several days before getting the actual brain radiation. I asked for another brain MRI just before radiation. Insurance probably won't pay but I want to know if the radiation is prophylactic or treating brain cancer. Once you have brain mets you are in a whole new ballgame.

Steve

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We had a telemedicine conference with an oncologist from Vanderbilt Cancer Institute in Nashville (Dr. Christine Lovly). It went extremely well and confirmed much of what I had read and also added to my knowledge.

Ginabeth could have been staged at IV instead of III. Apparently the radiation oncologist was very aggressive and felt that she could radiate all areas of the cancer where others may have said spread was outside what they could do. Apparently 1 of the lymph nodes was far enough from the primary cancer site to be "iffy" on staging. Dr. Lovely was very glad that Ginabeths cancer team treated so agressively.

We discussed 2nd line treatment so that I would have information when it is needed. Topotecan is the normal treatment for progression less than 6 months from 1st line treatment. However, the fact that Ginabeths cancer could have been staged at IV presents possibilities for treating differently. Nivolumab + Ipilimumab (immunotherapy) is her recommendation. It sounded to me like she would have treated progression with Topotecan in the the 2nd line scenario if staging had been II or maybe IIIA. I didn't pursue it.

Dr. Lovely was extremely excited about Lurbinectiden and is hoping the FDA gives full "something status" in August so oncologist can try it. She went on to say that we could consult with her at any time even. I took this to mean even while having another oncologist (2nd opinion).

I am much more comfortable with a path forward now that I have talked with Dr. Lovely.

Steve

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Hello Steve

I'm so sorry to read about the trials you and your wife have been through over the past few weeks. I hope you both have some easier times soon.

I start chemo tomorrow and I'm hoping it will be gentler than the slash and burn that I had for breast cancer. 

Trish 

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Update: It has been a little while since posting here. I did have a pretty good discussion with wifes oncologist after talking with another (see previous post). This past PETscan is a little inconclusive as there are still effects of radiation that may be masking what is cancer and what is not. He felt good in that the uptake went from 17 to 8. I asked about the value 8 and he said there could be radiation related reasons (radiation still working) causing pneumonia like "stuff" to be part of the SUV value. Another CT and PET is scheduled in a couple of months.

My wife is still fighting low salt issues (Mg, K, Na). She received Mg via IV last Friday and some saline solution to begin bring up her Na. It was 117 which I thought required hospitalization as this is extremely low. Since my wife was showing no symptoms a hospital visit is not called for. She was prescribed a salt pill each day and I am now waiting in the parking lot for her blood test. My worry is that she has to be hospitalized if the Na has not gone up. My wife is scheduled to begin brain radiation tomorrow and it has already been postponed due to her last hospital visit.

Note that my wife cancelled her Brain MRI last week out of the blue. She just didn't want to go which got me upset. She has yet to give me a reason but I suspect she doesn't want to know right now if there are brain mets. I'm not the one with cancer so I certainly have to bow to her wishes on this. Don't like it but it is what it is!

Steve

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Forgot to add to post above ... Wife's onc is thinking Nivolumab as second line treatment should it be needed. I didn't press any further since this appeared to be a breakthrough in talking with him. I fully expected Topotecan to be the recommendation.

Steve

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Hi Steve,

Always good to read your updates.  It was great to hear you got into to see Dr. Lovely.  She’s on our potential second opinion list as well. 
 

A note about the low sodium levels and your wife canceling the MRI.  We are dealing with a similar issue with my Mom who has had an endometrial cancer recurrence.  Her sodium level was 107 upon admission last month. She’s been pretty belligerent, not making rational decisions which the doc says is due to her low sodium levels.   The salt tablets are not consistently holding the salt levels.  
 

My mom has been in IP rehab for a few weeks & she’s refusing a biopsy for biomarker testing.  Unfortunately we have hijacked my Mom’s right to self determination and are having a nurse coordinator sneaking around scheduling the outpatient follow up appointments.  
 

Normally I would have said it’s my mothers right to refuse treatment and respected her decision. Bottom line, I know my mother is a fighter and if she were of sound mind the biopsy would not be an issue.  I will be in a big dog house when she finds out about it.  
Hang in there. 
Michelle

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Thx Michelle ... My wife is in the best shape shes been in since her dx ... She's eating fairly well because her esophagus pain is finally gone (2 weeks now) and mentally she seems much much better. Her sister thinks she is just re-establishing her will since feeling much better which is okay with me. She has pretty much been doing what I have said throughout this whole ordeal. If this is true, I hate that she decided to do it with the brain MRI. We now will never know if she had brain mets prior to completing the 10 treatments of radiation. My irritation may be more about my peace of mind concerning brain cancer. The SCLC literature is not good once you get brain mets. It could very well be that the low Na was causing funny decision making but too late now.

I just heard back about the blood test ... Na is up to 122 which is good but she needs a bag (4 grams) of Mg. More waiting in the parking lot. Apparently the low Na may not be hormone (typical cancer issue) related but salt loss related which is why the salt pills are working well.

LOL .... being in the doghouse ain't no fun nor is sleeping on the couch.

Steve

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Steve,

It appears the session with Dr. Lovely was fruitful. It is always good to have a second set of eyes on a problem and her offer of continued involvement is comforting. I'd send her flowers....

During all my chemo, I had low salt levels (Mg, K, Na). Now I struggle with low Mg and take 1000 mg per day on the advice of my oncologist. Taxol and Carboplatin sometimes affects blood chemistry and my doctor really doesn't have an explanation on why, post chemo, only Mg is affected.

I understand your concern with WBRT. I also understand scanziety! Brain mets are indeed scary and if I had SCLC, brain mets would be a pressing concern. While not an expert, I do understand WBRT can be safe and effective and I do hope that is the case for your wife.

Stay the course.

Tom

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