Wife Diagnosed w/ LS-SCLC stage 3

[Rower Michelle]

Hey Steve,

Just checking in to see how your wife is doing?  Give us a shout when you can.  

Michelle 

[MyWifeSCLC]

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

[MyWifeSCLC]

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

[MyWifeSCLC]

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

[MyWifeSCLC]

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

[Trish557]

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 

[MyWifeSCLC]

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

[MyWifeSCLC]

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

[Rower Michelle]

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

[MyWifeSCLC]

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

[Tom Galli]

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

[Rower Michelle]

Hi Steve,

Checking in time see how your doing? Let us know how when you can.  Been thinking about you guys. 
 

Michelle

[MyWifeSCLC]

Update: My wife completed her 10 days of HA-PCI (brain radiation) several weeks ago without any issues. Bloodwork is being performed every week mainly because of low Mg and sometimes K. It seems like she gets an IV For 1 or the other or both each week. Her Na has been under control since March. Unfortunately, a week and a half ago she was hospitalized for dangerously low Na (106). We hadn't had to worry about Na so it did not register on me that some of her recent mental issues were Na related. I felt like it might be related to brain radiation even though the hippocampus did not receive any radiation.

When low Na was diagnosed, I immediately assumed the cancer was growing again. Her oncologist ordered a CT a month earlier than scheduled. The cancer had actually shrunk even further and is now about 1.5cm x 1.5cm versus 3.5cm back in May and 6.5cm originally. The radiation oncologist was right in that chest radiation was working well after the end of radiation.

We are both ready for a PET scan but the oncologist wants to stay on schedule ... 3 more weeks.

All in all my wife is doing well except for this unexpected and sudden drop in Na.

Steve

[Tom Galli]

Steve,

I am so glad to hear from you. Moreover, that both types of radiation are having an effect and the scan shows a significant shrinkage of the primary. Sorry about the low sodium levels. I still fight my magnesium battle from all the taxol and carboplatin I've had and the principal side effect is muscle cramping. Nevertheless, I do know how hard it is to chase a mineral level.

Thanks for the update and...

Stay the course.

Tom

[MyWifeSCLC]

Update: Another 3 days in the hospital for pneumonia. I just knew Covid had caught up with us with a 101 temp, cough and weakness. Covid negative ... both our thoughts were ... better pneumonia than Covid. Yep ... that's a sad comment on the times.

Steve

[MyWifeSCLC]

Update: I havent updated this thread in some time. I've posted in a different thread on my wife's Mg Issues. This past Tue she didn't have a Mg IV. The previous 3 Tues her Mg was critical and IVs were called for. The Mg level this time was squarely in the "good" at 1.9. We have our fingers crossed that it will be good 2 weeks in a row.

This particular post is about HS-PCI since I recently read on this forum about Diana having brain Mets after not undergoing PCI. I have been regretting the decision to have HS-PCI because of my wife's recent (1 month) memory issues.  The question in my mind now - Is brain mets manageable for longer life versus managing severe memory loss.

Prior to cancer in January, my wife's memory was already deteriorating but we figured this may be "getting old". Brain CTs and MRIs indicated issues that could contribute to memory loss. This info comes from radiologist notes on the scans and some "semi interpretation" by doctors that are not Neurologists. November is the earliest my wife can see a Neurologists.

Looking back I noticed a step change for the worse in my wife's memory after her 3rd chemo cycle in late March. Presumably this is "chemo brain".

For the past month or month and a half my wife's memory issues have become severe (early to mid July). Her last HS-PCI treatment was early April. We were cautioned that avoiding the hippocampus did not completely remove the risk of memory issues.

I have been cautioned by several doctors (primary, onc, hospital docs, etc.) that memory loss issues are hard to diagnose and even harder to determine cause.  It may be coincidence that I noticed these changes after key moments in my wife's treatment.

I can no longer set meds out to be taken at a specific time. She sees them on the table and goes ahead and takes them. I can no longer keep her meds accessible because she thinks she needs to take her pills so she will "willy nilly" rummage the medicine bottles for specific pills. She has a fixation on the "pink pill" which is her thyroid med. Her 75mg BP med is also pink and so is her arrythmia med. This all came to a head about 2 weeks ago when I noticed her arrythmia and BP meds were gone from the following days medicines placed in the back bedroom. She has essentially doubled up on her BP meds. I was up all night checking her BP and pulse. It did drop more so than usual but not dangerously so. Bottom line is that all medicines, including Tylenol, cough medicine, etc. are in my truck in the garage.  I now give her meds and have to watch her take them to make sure she doesn't drop any. That's a whole 'nother story (pills on the floor). 

I've continued to tweak my routine in the last few weeks but now I am really concerned about leaving her alone.  In general, she seems good with moderate memory lapses but then something really severe happens.  There are many more examples that I won't go into here.

No one can tell me is this her pre-chemo memory getting worse, is this a continuing and worsening of chemo brain or is this directly related to brain radiation. There are a lot of things that have been hard for me this year but my wife's memory is the absolute worse!

Steve

[0621121974]

My husband had whole brain radiation almost 23 months ago. Other than short term memory loss, he doesn't have those types of issues. And he didn't exhibit the short term loss until at least 5-6 months after his WBRT. 

Do you mind me asking how old your wife is? You said she was having issues prior to all of this, so it may just be that the treatment is just adding to memory issues she had already.

My thoughts and prayers are with you. 

 

[MyWifeSCLC]

She's 63.

I have read that chemo brain is not normally severe and you rarely see the adjective severe attached to chemo brain so I don't think that is it.

I also have read that the entire cancer scenario can make onset of dementia worse. This is what I think is happening.

I guess there could be some effects associated with the HS-PCI but who knows.

We cannot get her in to see a Neurologist because they are booked so far out. They require a referral and paperwork documenting memory loss. She took a memory test last week in which she did not do well in my opinion but I have yet to hear from her primary on the referral.

The radiation oncologist has the authority, I think, to prescribe memantine (memory meds) after HA-PCI but his office has yet to call back.

It's always wait, wait, wait.

Steve

[MyWifeSCLC]

My wifes radiation oncologist prescribed memantine (dementia meds) for her memory issues. He knew we were trying to get in to see a neurologist and said to be sure to do that. He had no problem with the prescription since it is recommended as part of brain radiation treatment for older adults. It was his nurse that we got all the info from. Her actual words were "elderly adults". At age 63 my wife would not be considered elderly, however, this cancer has turned her into an elderly person. I hate it but thats just life.

For those unfamiliar with memantine, it does not reduce memory issues associated with dementia, it only slows it down. It also should be given early when dementia is diagnosed. In my mother's case, it was really given too late to have any real effect.

The purpose for this particular post is to suggest to those diagnosed with cancer, to evaluate your memory before chemo and radiation. This could just be self evaluation with a family member or friend. I knew before the cancer dx that my wife was already having memory issues. Unfortunately, the cancer consumed us and seeing a neurologist was never presented to us. We have no base line information that a neurologist can use. We only have my notes over the course of this year. When we do finally see a neurologist probably toward the end of the year, she (already picked one out) will be "behind the 8-ball" so to speak.  My wifes primary did make the referral so we are just waiting for the call to schedule an appointment.

This probably should have been posted in the radiation section. Perhaps someone who knows how to quote in a separate subgroup can repost or attach this to 1 of my threads in that subgroup.

Steve

[Tom Galli]

Steve,

No problem where you post this. Folks will pick it up.

I hope for the best outcome for your wife. 

Stay the course.

Tom

[MyWifeSCLC]

Update:

My wifes cancer has spread to her liver. A couple in the 1 to 2cm range, 3 just less than 1 cm and several tiny ones (no count). Damn this stuff is fast growing! Mid-July and all is well (sort of) and 2 months later 4 letter word, 4 letter word ....

Yep ... We are in shock again! This feels like January 28 (first told about cancer) all over again but worse. Onc doesn't want to do any additional treatment due to her poor health.

She is currently in the hospital due to falling several times. We were supposed to receive this news in the Oncs office. My wife had a brain MRI and chest CT last week which was a 2 month (not 3) interval. Onc came to hospital to give us the bad news. I pushed back a little on no treatment so he gave us a week to see if her health might improve enough to be re-evaluated for secondary treatment. I suspect that he did this to give us time to think about hospice. No time frame was given to us but I'm sure we will get this info next week if hospice is the way to go.

I'm waiting on a second opinion, especially on SBRT or proton therapy to the lesions which her Onc is strongly opposed to.

Steve

[Tom Galli]

Steve,

It is so hard to find words to describe what I feel when I read about your wife's recurrence. My wife and I had a hard time finding closure on learning of our 5th recurrence. Any variety of lung cancer is just nasty. Small cell is an aggressive spreader.

SBRT did finally eradicate my persistent tumor, but it was a single one and I was otherwise in very good health. I was lucky the FDA approved SBRT for lung tumors just in time. Prior to its emergence, we were researching hospice care providers. 

I do hope you find a second opinion that satisfies.

Stay the course.

Tom

[Sabacat]

Steve, I haven't been around long, but have followed your posts.  My heart goes out to you both.  This is such a sinister disease. 😿 Praying you find another option for treatment.  

Susan 

[MyWifeSCLC]

My wife decided to go with hospice which was tough on me but I think is the right decision.

A snafu with someone in Dr. Lovly's office prolonged a possible 2nd opinion which was ultimately not needed from her. We had a hospitalist give us a 2nd opinion and we talked to several nurses here while in the hospital. There were too many lesions on her liver for pen point radiation to be effective. As mentioned previously, my wife is a long way from being in shape for further treatment. Everyone felt that further treatment would hurt her quality of life with the likelyhood of being ineffective.

My wifes incontinence has only gotten worse while in the hospital so they put a catheter in which will help when she goes home tomorrow. She wants an ambulance to take her home since the catheter and urine bag will be a pain in the butt getting in and out of my mustang or worse getting up into "her" truck. LOL her words.

Steve

P.S. her sister is with her now so I can meet with hospice at the house today.

[Babs]

Steve,

I’m so so sorry to read this news!  Hopefully you both can find both some peace and relief with the hospice care.  You’re in many peoples thoughts and prayers...

Babs