Wife Diagnosed w/ LS-SCLC stage 3

[MyWifeSCLC]

Wife finally got discharged from hospital. She got her daily radiation and is really glad to be back home.

Diagnoses is heart arrhythmia due to radiation treatments. You wont believe the number of BP and arrythmia meds: Hydralazine (25mg) 2xdaily; Amlodipine (5mg) 1xdaily; Propranolol (20mg) 2xdaily [orig for migraines and now part of arrythmia med]; Metoprolol (50mg) 2xdaily; and Chlorthalidon (25mg) 1xdaily [also for diuretic - short term med].

They got the high BP and arrythmia under control so I shouldn't complain. Some of these meds should go away after radiation effects dissipate.

Steve

[MyWifeSCLC]

Update: Wife back in hospital today. Was expecting it after Wed blood test. Her Mg was critical, Na and K was low; her RBC, WBC and platelets were low. She got a bag of Mg yesterday and then bloodwork today to check that Mg was better. Mg and Na was good but K, RBC, WBC, and platelets were critically low. Was told to get K and antibiotics from CVS and give it to her "yesterday"! They decided better to send her to hospital. Hanging IVs for red blood cell (2 bags), platelets (1 bag), and K (1 bag).

She is much more fatigued tha usual. The low salts and blood items are the culprit. Her throat is hurting much more than usual. Perhaps the ongoing radiation is making her throat worse but I'm sure all the other stuff has some to do with it. Her blood pressure was getting a little scary low last night but got it back up with raising her legs higher than heart and drinking water. Need to get prepared for high BP and swelling which is what happened last time she got tons of fluids!

I can see it on her face; she is really getting tired of this yo-yoing of BP issues, salt issues, and blood issues. I'm tired of it too but don't want to let her know. She still has 7 more days of radiation and 3 more cycles of chemo.

We meet with her onc during the 4th cycle of chemo and I'm told that he will ask how things are going before approving the last 2 cycles. She may say let's stop for now because symptoms and side effects are too much. In my opinion her primary cancer hasn't shrunk enough yet. Recall she had a CT during last weeks hospital stay and cancer had shrunk from 6+ cm to just over 5 cm. I'm assuming that her onc will tell the truth about whether 1cm of remission is good half way through chemo.

I'm worried that the conversation with her onc will be about currents issues and not looking forward. Recall I'm wanting a brain MRI as soon as possible and HA- PCI if no brain mets, as soon possible. Probably not going to happen since not normal procedure. I will freaking lose my mind if she has brain mets and we waited until well after the 6th cycle of chemo.

This all just sucks and feels like things are getting well beyond me and I'm not the one with cancer.

Steve

[Rower Michelle]

Steve

I’m so sorry to hear about the readmission, one hour, one test at a time.  This is a roller coaster ride no one wants to take.  Know that you are not alone, you will be in our prayers. 
Michelle 

[Tom Galli]

Steve,

I'm so very sorry to hear of your wife's treatment side-effects. I've been off-line myself, unable to sit in front of my computer because of a very painful neck and numbness extending to my right hand. Had a face time consult with orthopedic surgeon to review results of MRI. Have severe herniation of disc at C-5/C-6. Likely facing surgery when COVID-19 wanes. Weird typing on keyboard and not feeling anything in my right fingers.

I completely understand your concern about BP, salt levels and other problems. I note her tumor has reduced by 1 cm and that is a good indication that chemo is having an effect. Let us hope she is able to complete the course of chemo and a post treatment scan shows NED.

Stay the course.

Tom

 

[BridgetO]

Steve,

This definitely sucks! Im so sorry to hear about your wife's ongoing issues.  Know that we are thinking about you and hang in there! 

Quote

 

 

[TJM]

Steve,

Wife is in my thoughts. As for the tumor shrinkage, remember that the 1st cm is by far the biggest reduction. Guessing close to the same as 2 cm from here ( didnt do the math) so hoping next scan shows even greater progress.

I cannot help with the blood issues (yet) but I have only had one treatment. My next is Tuesday.

Peace

Tom

[MyWifeSCLC]

Well ... at the hospital again ... wife is getting 2 bags of platelets. At least it's only a couple of hrs outpatient.

4th cycle of chemo next week ... wonder if we'll do it all again! They never said anything about low salts (Na, Mg, K, etc.) so that's a good thing.

My wife got really pissed when they told her ... for me that was a good thing. She's still in the fight mentally.

Steve

P.S. just found out 2 bags of K are needed. Headed home to wait. Would have been nice to know so I didnt have to wait in the hospital parking lot.

[TJM]

Steve,

So sorry your wife is struggling with Chemo. Do you know if the radiation compounds the blood issues? I ask because based on earlier posts from you I am watching my blood levels closely. The test from Monday was good so it got me thinking.

Hope she feels better now she got infusions.  Wish you both the best.

Peace

Tom

[MyWifeSCLC]

The radiologist indicates all my wife's issues are chemo related except for esophagus pain. Not sure I believe that entirely.

I need to go back and read my posts again but it "feels" like blood issues got worse as additional chemo cycles occurred. She starts 4th cycle next Tue.

Steve

[MyWifeSCLC]

Met with wife's onc today. The words "not encouraging" still stick in my mind. My wife heard it too and is especially down today. These words came when I asked about the very small reduction in primary cancer seen with a recent CT scan in one of her hospital stays. I could tell that her onc didnt want me to bring this up. He was all about "cure" and let's wait until chemo was over to see where we were. My wife didnt start her 4th cycle of chemo today due to very low platelets in particular and other low items in general. I just assumed she would get another hospital stay for a boatload of IVs as has been the case previously. He indicated that he wanted too look at blood work again next Tue to determine whether to start the 4th cycle then. I can only assume, since I didnt ask, that he wants to see if her body responds well without any interference with chemo, IVs and radiation. By the way her last radiation was this morning.

I brought up the topics of PCI, HA-PCI and SBRT which is what I have been wanting to talk about for a month. He said that those are things that I should talk about with her radiologists. I told him that I had tried with little success. He indicated that she was an excellent radiologist which doesn't help me at all! I told him that we would be seeking a 2nd opinion on radiology and he had no problem with that. I did say to her onc thst I wanted to get his opinion before getting 2nd opinions. He was obviously not the person to talk to about anything radiation wise. He did take some notes but I felt it was more for me than for him. I told him about my concern about brain mets and about memory loss with PCI. He is solely focused on the chemo treatment and results from it.  A brain MRI, Pet scan and other items would not be done until 3 weeks after 4th cycle of chemo.  Oh ... there is no planned 5th and 6th cycle of chemo. You can read the previous posts to see that I am confused. I started out think 4 only, then believed it would be 6, the believed it might be 6 based on where we were with 4 cycles. His comment was 4 cycles is current standard for curative intent.

I could tell he was needing to go because he was already late with other appointments. We were 30 min late to see him. I chose not to ask any more of my list of things because I was numb by then.

I know I am rambling and have much much more I could say but wont.  I have to take this all in and see where my wife is at mentally over the next few days. Assuming she is okay with it, I will begin the process of 2nd and 3rd opinions on paths forward.

Steve

[Tom Galli]

Steve,

I'm so very sorry that you are not getting straight answers to your very appropriate questions. No a medical oncologist is not a radiation wizard but I bet they know enough to discuss possibility of future treatment and impact, at least in general terms. My medical oncologist and my wife had a very lengthy conversation about the risks and opportunities associated with SBRT, and when I had my CyberKnife, it just received FDA approval to treat lung cancer patients. As concerns PCI, your medical oncologist ought at least be able to tell you in general terms PCI risks and benefits. I may be wrong but has your wife been diagnosed with brain mets or are you seeking this information ahead of an actual diagnosis?

I've generally heard chemo standard of care for SCLC is 4 cycles, then evaluate and decide on further treatment. I've also heard the typical post treatment scan/brain MRI is 3 weeks after the last chemo. NSCLC conventional chemo is 6 to 9 cycles with most stopping at 6 but NSCLC is a slow mutator compared to SCLC.

I won't sugar coat things. You already know that SCLC is difficult to treat.  If first line doesn't show results, another recipe or treatment needs to be on deck.

You can ramble as much as you need to. I understand how hard this is for both of you and wish I could wave away all this mayhem with my magic wand.  

Stay the course.

Tom

 

[MyWifeSCLC]

Thx Tom ... my wife has not had a recent brain MRI yet. My concern is all the literature indicates once brain mets occur with SCLC, then it becomes an ongoing battle of which kills you, complications due to BM or primary cancer. If there are such a thing, BM issues can be more horrible than primary tumor issues. There is a very real possibility that BM is soon to occur and the idea behind PCI is to get it before BM. I at least wanted to know the risks of PCI now instead of waiting. Perhaps my wife would have taken that risk vs BM. In my opinion there has been nothing aggressive about her doctors thinking even though that is what we were told from the get go.

I knew when the impromptu CT scan showed only a minor shrinkage that things weren't going well. Everyone kept telling us this was great. I'm sure that is a method to keep ones chin up, until treatment is completed.

I'm rather blunt with everyone but my wife. However, it is probably past due for me preparing her for the worst. I guess I did what the doctors and nurses were doing by going along with ... hey everything us going fine. Perhaps that was the wrong way.

Anyway we have a week to discuss the onc's comment "not encouraging". Assuming her 4th cycle of chemo starts next week, my wife wouldn't have the mental focus she needs to discuss things.

Steve

[Tom Galli]

Steve,

I understand your dilemma. If we’re me, I’d wait till I had imaging indication of BM. You are right, SCLC very commonly moves to the brain, but I’d want to know before radiation.

Stay the course.

Tom

[D iane]

I'm so sorry to hear things aren't going well through this 1st line treatment.  I shall remain hopeful that she can have cycle 4, and/or they can perhaps change chemo to another one that may buy some more time.

I dread the day having the "not encouraging" or the scans show bad news conversation.  We are currently awaiting results.   I let my husband feel what he is going to feel and let him make his own decision on his treatment.  He knows the ultimate outcome.  I trust you and your wife will be at peace with whatever comes to be.  I would have to read back, my husband had the brain MRI right after diagnosis, did your wife as well?

Anyway, I really and truly feel for you.  You and I are almost in the same shoes. I am a breast cancer survivor so I know what getting a diagnosis does to your mind.  How is it that I live but he will one day die? I think I got cancer first so our family would be a bit better prepared for the next battle that came along.  It's here!!  My husband recently said amid this virus crisis that there are lots of folks out there now that have the same fear and worry about getting a dire diagnosis.  Wishing you peace through the fight.  

[MyWifeSCLC]

Thx Tom and Diane

My wife did get a brain MRI after initial dx and was clear. I had hoped to have a conversation about getting another MRI soon but her onc was challenging to talk to and very rigid in procedure. Her onc was or is military so I can understand rigid but not necessarily in this instance. With the possible bad news based on his comment of "not encouraging" why not have a brain MRI now to see where she is with BM. If no BM perhaps PCI is a good cal soon and not later. Dont really know because the conversation didnt happen.

Already having my wife's medical records sent to UT medical center in Knoxville for 2nd opinion. At least get someone to talk at length with us even if the answer is the same.

The 2nd opinion call did perk my wife up. I will continue to update.

Thx again ... Steve

[D iane]

Steve, glad to hear your wife would be up to going to Knoxville for a 2nd opinion.   UT may give you a more detailed evaluation if not more testing and go from there.  Pulling for you both!

I hope to have an update to my topic tomorrow.  As you can tell, I'm a wreck waiting. He is feeling well though...….that's something to hold onto to.

[BridgetO]

Hey Steve,

Good your wife is getting a second opinion! And don't get too hung up on "not encouraging" . Prior to having lung cancer, I had an unrelated cancer with a "dire prognosis" (my medical onc's words). I got a second opinion from a doctor at a Comprehensive Cancer Center, who was great. My med onc agreed to follow the second opinion doctor's recommendation, which was for additional chemo. And here I am today, 8 years later, NED.

Hang in there. There is hope,

Bridget O

[MyWifeSCLC]

Update: I didnt realize that my wife's onc prescribed home care.  A nutritionist and a physical therapist called us. I recall her onc saying she needs to eat better and needs to get more exercise but neither if us recall home health care being mentioned. Just another miscommunication in a long line. We decided that the nutritionist didnt need to come but could give information to us over the phone. We meet with the PT on Monday morning and she can go over what us needed and shouldn't have to come back.

I will admit being surprised and deeply worried that her onc is beginning his preparation for bad news because of the words home care. Its probably not that as there are still options on the table.

Steve

[Tom Galli]

Steve,

Could be but I recall my discussions with home hospice care with my oncologist. The paperwork was like a hospital admission with the doctor having to prescribe all my maintenance meds along with pain killers and other related medication. He also needed to order an oxygen separator for O2. 

I do pray there are more options on the table.

Stay the course.

Tom 

[Rower Michelle]

Hi Steve,

I’m so sorry you’re having to go through all of this.  I’m glad you’re getting a second opinion, I’m wondering if you had considered reaching out to  Christine Lovely MD at Vanderbilt University?  She’s a lung cancer expert with her own research lab.  We had the opportunity to sit in on one of her lectures in Atlanta last summer. We were very impressed with her expertise, compassion and commitment to see her patients succeed.  
 

You might also want to reach out to the GO2FOUNDATION and spend with Andrew Cieupek PHD, he heads up the patient research advocacy.  He was a guest speaker for our support group, maybe worth reaching out to him as well. 
 

I’m glad your wife is still in the fight, stay strong. We’re here for you. 
Michelle

[MyWifeSCLC]

Update: Wife is finishing up her 4th and final cycle of chemo. Boy is she glad of that.  Bloodwork today is not good for the umpteenth time. She is being scheduled for a long day of IVs tomorrow. She is not aware of this yet as I am waiting in the parking lot for her to finish chemo. I hate covid-19. I'm sure a four-letter word will follow when she finds out.

Her onc referred her to a Proton Therapy outfit which is scheduled next week. My mini-rant about wife's radiologist must have made an impression. An hour consult is planned to discuss treatment for the brain and the primary cancer both in the near future and long term. I found out that my sister is friends with a "big wig" with them. Her friend has already responded in just the last few minutes that she will be paying attention to our case. LOL ... I guess it helps to know somebody that knows somebody!

I'll post about the proton therapy conversation next week.

Steve

[Rower Michelle]

Hi Steve, 

I spent years in the healthcare delivery system where the running tag line was it wasn't what you know but WHO you know.  Shouldn't have to come to that, but unfortunately the squeaky wheel gets the attention.  Good for you. 

You might want to give the insurance company a heads up as Proton Therapy is a shiny new object that isn't necessary a covered benefit. Might be a bit of a fight so find out in advance what the benefits will support to ensure no surprise billing.  

Glad the wife is going through the final round of chemo. 

Michelle 

[MyWifeSCLC]

Thx Michelle ... I will talk about insurance with the Proton Therapy folks during next weeks consult. The consult is not covered by insurance but I told them I would pay the $190 up front just to talk with someone and would go from there.  Apparently, my wife is not old enough yet ... meaning Medicare pays for Proton Therapy stuff.

Things seem to be moving pretty quick now.  A brain MRI is scheduled for next week and a PET scan the following week. I'm sure that the Proton Therapy folks and possibly a new onc will need that info to plan going forward.

Steve

[MyWifeSCLC]

Update:

We met with Proton Therapy radiologist on Tuesday and were very impressed with what PT had to offer. We were there to discuss PCI and in particular HA-PCI. They could do both with PT. Unfortunately, insurance doesn't pay for PT. Medicare does pay but my wife isn't 65 yet. We were steered to an excellent radiologist that did standard radiation.

My wife had a brain MRI on Wednesday. We visited a top radiologist in Knoxville TN today and he informed us that her brain was clear ... that definitely made our day. I have been so concerned about brain mets, maybe more so than the primary cancer. The radiologist told my wife that he would do either of PCI or HA-PCI. He handles locally the national clinical trial for hippocampus-avoidance PCI. He also said that he could look into getting her into the trial. He told us to think about the clinical trial after we dismissed it immediately because we would not know if she was selected for PCI or HA-PCI. The treatment is given 4 weeks or more after the last chemo treatment so that is the plan. He is going to start working on our insurance company for the HA-PCI and would keep us posted.

A PET CT will occur next Tuesday which will give us information on the primary cancer and hopefully find nothing anywhere else.

Al in all, a very good day.

Steve

[MyWifeSCLC]

Just when I thought my wife's blood pressure issues were over ... this past Monday, she was admitted to ER with low blood pressure and erratic heart rate which was the same as her last extended hospital stay. And just like last time no heart attack or blood clot; just dehydration and low everything (RBC, WBC, platelets, you name it). They got the arythmia under control but the hospital has been hanging IVs everyday. Blood counts go up with the IVs then back down presumably due to chemo 10-12 days ago. She also had an infection in her lungs (I think) so Covid testing occurred and was negative. As with last hospital stay doctor said sometimes body just gets overwhelmed and reacts badly such as blood pressure issues.

My wife has not eaten well recently since her throat started getting sore last week. They decided to look into this while in the hospital. They did a scan while she swallowed something and could tell their were issues. She was scheduled for a scope to go looking for esophagus scarring or stiffening of the esophagus muscles today. That was cancelled because someone on the floor is being tested for Covid. If it comes back negative, endoscopy (I think) is back on. If positive then no one on the floor gets procedures until all get Covid testing AGAIN!

I hate this Covid virus with a passion! Oh and she missed her PET scan on Tuesday. She is really pissed at having to be in the hospital and is not scheduled to leave until Friday.

Steve