Family Response

[islandgirls]

Sitting here with my boyfriend (stage IV adenocarcinoma with brain mets) and he just finished 10 days of WBRT.

His question is what was the response that your immediate family members had to the diagnosis?

Did they support you seeking treatment? He is struggling with his daughter who doesn’t want to see him suffer through chemo. (His only option right now is the triplet of chemo/immunotherapy as he has no actionable mutations and a PD-L1 of 0.)

Have any of you been faced with the choice of treatment, knowing the odds are not greatly in your favor and risking putting your family through suffering, but chose to do it anyway? (Hopefully with favorable outcomes,)

He asked me to pose this question to you all. Thank you!
 

[TJM]

To answer your question directly. To quote my wife...fight the cancer till you can't do it anymore. I have been there for my brother and my dad, so I totally understand the fear. But treatment decisions are mine. Nobody elses.

Sure. If I was incapacitated and not able to decide for myself then maybe my wife would have to make that hard call. Hopefully, if it comes to it, I will be cognizant enough to make that decision myself.

As for facing a choice like he has? I am one bad scan away from there.  I have no clue what second line treatment for Large Cell is. Dont think my oncologist has any better ideas. I actually expect it to be similar to the triplet. It WILL be something.

Get treated. If he hates it reaccess. But it is his decision in the end. Good luck.

Peace

Tom

[Judy M2]

Of course everyone supported my decision to undergo treatments! My oncologist wanted to be aggressive, and boy was it ever.  I suffered severe side effects from radiation and chemo and almost died last year, but I believe my case was extreme. I have stared death in the face and came through it stronger and unafraid. 

Quite frankly, my decision to go through treatments was mine and no one else's. Yes, my husband of 29 years suffered too, and so did my sister. But this is MY fight. Their job was to be there for me, as I would be for them. My husband was an excellent caregiver, for which I am grateful. 

Would I do it again? Yes, but I'd be smarter and engage palliative care at the beginning. They are experts at managing pain and other side effects. Had I done so, I could have avoided really painful and unpleasant abdominal surgery and protracted recovery from that.

At the very least, have your boyfriend speak with a palliative care team so he can get an idea how they would treat chemo side effects. They are so nice and really listen to their patient. Good luck. 

[LexieCat]

My family, small as it is, has been very supportive. My daughter came out from Colorado (where they all live) to stay with me the first few months. I didn't really need the help, but I did appreciate the company and the support. My son drove her out here, so I got to visit with him before all my treatments started. My daughter moved back home right before Christmas. I'm very close with their dad (my ex) and his wife, and they check in with me and give me moral support, as do my brother and his wife. 

If my cancer/treatment become terribly involved/complicated, I'd consider moving back to be closer to them. Or maybe one of them would come back out here. 

As others here have noted, if I were to run out of options that would give me at least a shot at a decent quality of life, at that point I might re-assess and decide to forgo further treatment. But I'm a ways out from that right now--I've been having a good response to the chemo/immunotherapy. 

Know what my response would be to a family member who wanted me to forgo treatment because they didn't want to see me suffer? Then stay away. Seriously. I'd sooner deal with it on my own, with people who will support MY decisions, not impose theirs on me.

[LexieCat]

One more thing--I think his daughter's idea of the effects of chemo are grossly exaggerated. Occasionally someone will be unable to tolerate the side effects--in that case, something else can be tried. But for most of us, it really isn't that bad. I kept track of my side effects after each infusion to help me have an idea what to expect.

Day 1 and 2 I usually felt GREAT. They prescribe dexamethasone the day before, day of, and day after the infusion. That makes me (and most people) feel very energetic. They give me an infusion and a couple of pills along with the chemo to prevent nausea. They also gave me two anti-nausea medicines to take if I started to feel nauseous--I never needed more than 2 or 3 of those each time. I never threw up at all and never lost my appetite (I've gained weight since I've been on treatment!). Day 4 is when the fatigue hits hard--lots of us find we spend a day or two sleeping a lot at about that point. But it's generally only a day or two that it gets heavy-duty. The rest of the cycle, for me, was pretty uneventful. Some days I had more fatigue than others and didn't feel like doing much. I had trouble with my legal job (detailed legal analysis) due to "brain fog," so I went out on disability. But it didn't cause me any suffering--it was just annoying. 

And that, for me, was it. And the Carboplatin is the most toxic of those drugs, so when they stop that, it gets even easier.

The point is, most people don't suffer all that much during chemo. Everyone has their own response, but for those who can't tolerate it, there is usually another drug regimen that will work.

[GaryG]

If my family is not there for me through bad times, then they are not my family.  Risking putting my family through suffering? Well sorry about the inconvenience but this is not about them.  It is not like I have decided to have cancer. As for the odds, as long as there is a glimmer of hope,  there is  a chance to beat the odds. That said, going through the cancer journey is a sure way of weeding out the caring from the uncaring, the true friend from the false one and a  close family member from a non family member.   

[Tom Galli]

Islandgirls,

Have I faced the choice of treatment, knowing odds were not in my favor but chose to do it anyway? Yes. Note I did not include the portion of your boyfriend's question "risking putting your family through suffering". I pondered that statement for a long time before attempting this answer. My life, like all others, will end someday. My family will grieve my passing. Despite my best efforts, I cannot postpone my expiration date nor the associated grieving. These two realities seem to be an unalterable fact of life.

I've experienced many gruesome treatments and side effects and unplanned effects in my battle to stay alive. My family kept a close vigil. They were saddened by my condition but did they suffer? I asked my wife and daughter this very question and their answer was an unqualified no. My daughter was upset because she was unable to influence outcomes. My wife wanted to ensure I was not in unnecessary pain. I was on death's edge on several occasions but there was no suffering. The drugs administered while in a medically induced coma erased my short term memory so I have no recollection of the plight that rushed me to the ICU.

As best as I can determine, we only get one chance at life. If we choose treatment for lung cancer, we get a chance at life extension. If we don't choose treatment, we'll experience a shorter lifespan. This is the decision I faced. I believe the mathematics principal of simplifying the equation before solving applies in this situation. Simplified, the equation resolves to life or no life.

Stay the course.

Tom

[LouT]

Islandgirls,

You've gotten some great input from the group and I agree with all of them.  Early in my diagnosis I had no idea if my treatment would be surgery, chemo, radiation or a combo of all three.  I did speak with my children and my one adult daughter "spoke for the group" when she said, "if you die we'll kill you".  That was all I needed to hear.  The patient is the one who makes the decision and the family can choose to support them or not.  But, I'm sure your boyfriend's daughter wants her dad to be with her.  If she doesn't want to see him suffer, she certainly wouldn't want to lose him.  Please do what you can to put his mind at ease.  Life is worth fighting for.  

Lou

[Jennedy]

@islandgirls i was diagnosed in June 2020 with Stage IV adenocarcinoma with mets to my right clavicle. I started with a targeted medication, Tagrisso, but it didn't work for me. I have since started on chemotherapy Carboplatin, alimta, Keytruda. Before those meds are started I get an IV of steroids and Zofran to help with side effects. Everyone is amazed that I am doing as well as I am.  I have had very little nausea. I am tired. I'm not myself. But I am here and feeling pretty  darn good. I can enjoy time with my daughters, grand daughters, friends, siblings,  mother and husband. My daughters would be angrier with me if I wasn't trying to fight this.  I know they will suffer when I'm gone. And I know they don't want to seem suffer now. But they will also help me in any way that they can to alleviate that suffering. 

In September, I will dance at my youngest daughter's wedding. Cancer be damned!

[islandgirls]

I am so grateful I found this site. Reading all of your words of encouragement has given me such hope, and I am doing my best to convey that hope to my boyfriend.

Last night he was really overtaken with emotion when he asked me to pose this question. I read him a few of the responses this morning. But I have to proceed cautiously, as his thinking and reactions are still being impaired by his BM. I trust my instinct on when info is becoming overload to him, and I sensed that and eased up today.

However, in conversations today with friends I heard him say “debating chemo” instead of “not doing chemo.” Baby steps. But I don’t want him to hesitate much longer... 

Your input and personal stories may just be what inspires him to fight, so please know how much I thank each one of you for sharing your story and urging him to join all of you as a survivor.

Hopefully I have a positive update for you, soon!

 

[TJM]

Glad to help. If I was going to bet I would bet he picks treatment.

At the right time you might mention to him that not doing treatment won't be a walk in the park.

Peace

Tom

[islandgirls]

@TJM ... yeah. I already went there.

I mentioned that not choosing treatment could be (and he finished my sentence...) ugly.

I am sitting here telling myself that I have done all I can to give him good information to weigh in his decision. It is out of my hands and I am hoping your bet has a big payoff. For all of us!!

[Rower Michelle]

Hello and welcome,

You’ve already heard from the amazing people here in how they approached the first round of treatment.  I was diagnosed at the age of 51, the initial biomarker studies yielded nothing targetable.  I still remembered how my Grandmother suffered through chemo when I was a child and my initial reaction was to not go down the chemo path.  We had spoken to a few close friends who were devastated but no one pressured us into doing treatment because they held the same misconceptions about lung cancer treatment I had.  
 

The next appointment with my oncologist I told him I didn’t want to do chemo. His response surprised me “I think it’s going to make you feel better”.  I couldn’t get my head wrapped around it but at the same time nothing was helping that cough and I didn’t want to break any more ribs.  
 

After a B12 shot I started Folic acid and the following week I received the triplet combo. The team was very proactive in managing the potential side effects, with a little bit of constipation from the steroids.  
 

There has been more progress in lung cancer treatment in the last three years than in the last thirty.  In 2020, there were 11 (possibly more) new therapies approved by the FDA.  The treatment pipeline is a big one.  While every treatment decision is personal, I’m glad my oncologist gave me a little push... 
 

Michelle

 

[islandgirls]

Update:

Today he told me and I quote:

”I am doing the treatment no matter what (daughter) says.”

I burst into tears, jumped up from the table and ran around to kiss him. Then I made him pinky swear. 

I am still cautious until the port is in and the first infusion happens, but ladies and gentleman, I applaud and thank you for your assistance!

 

[Jennedy]

Fabulous news!

[LexieCat]

Fantastic! Seems to me you deserve a lot of the credit for approaching this in the right way, so he didn't dig in or resent your efforts. 

Remember to remind him, when there are bumps in the treatment road, that these are normal and to be expected--AND that there are strategies to improve the situation. Wouldn't hurt to get that palliative care piece in place early on. I'm actually meeting (via video) with my palliative care NP today--I'm in a study to see how much it helps to engage them at the beginning of treatment. I see them about once a treatment cycle--generally a week or two before my infusion. They just chat with me to see how I'm feeling and find out if there are any issues I need help with. They ask about things like appetite, nausea, any pain, etc. 

[Rower Michelle]

My friend @Tom Galli says getting "the battle rattle" is key to survivorship.  Having a determined mindset sets the tone for starting treatment.  It sends a strong message to the nurses too, your boyfriend is ready to as we call it "get the show on the road".    Your boyfriend's daughter probably has a perception about the old days of chemo.  A lot has changed in the last three years.  There has been more treatment advances in the last three years than in the last thirty.   There is a mindset shift from "what if" to "what comes next".     There are treatment options today, people can live with this disease.   I'm two and a half years into this.   

One of the best resources I found was a book written by 20 year Stage IV lung cancer survivor Greg Anderson:  "Cancer- The Fifty things to do".   It's a step by step process of how to develop the game plan.  I found it to be invaluable.   

So here's to getting the show on the road, we're all family here. 

Michelle 

[TJM]

Awesome! Five years from now occasionally look over at him and ask..."who saved your life again?". Remember to smile because you did!

Peace

Tom

[islandgirls]

Hi All,

His appointment with his oncologist isn’t until Wednesday... not sure why the nurse didn’t just reschedule the port (he canceled the first appointment), and she actually left a snarky voicemail reprimanding him for cancelling “three times.” He canceled once. So don’t get me started on wanting to tattle-tail to the doctor about his nurse’s attitude! Ugh.

I am trying not to fret over this delay, as if he had not canceled, the port would have been placed on February 22nd with treatment starting the next day... 

How long between diagnosis and treatment was it for you all? He was diagnosed February 1st, the 3rd with specific biopsy results... then had WBRT for 10 days.

I am just worried over this delay.

Thanks!

[LexieCat]

I'm not sure why he can't start treatment without the port. The port just makes it easier to access the veins--it's not a requirement to start treatment. 

Have you/he asked about that? 

[LexieCat]

Oh, and the delay doesn't sound alarming to me. Lots of people have delays in starting treatments--I was diagnosed in July and didn't start treatment till mid-September. 

Plus he's been getting the radiation in the meantime. I'm sure it's fine--you want to start ASAP, but as I said, less than a month's wait doesn't sound excessive to me.

[islandgirls]

Thanks @LexieCat True about the port. Duh. I was just thinking they wanted that in first as that’s how it was originally scheduled. But of course he doesn’t need it to get the treatment going...

I just have this irrational fear that his daughter (going with him to the appointment) will somehow convince the oncologist to talk him out of treatment. Silly, I know. But I will just rest easier after he gets his first dose of the “juice” as we are calling it.

Thanks, as always, for your supportive words!

 

[Judy M2]

I was diagnosed on 10/25/19 and started chemo and radiation on 12/3/19. I had lots of procedures to get through first:  bronchoscopy, port placement, a Teflon injection to my left vocal cord and dental work.

I also had an hour-long chemo education session at my infusion center, where a nurse practitioner gave me written materials, explained what to expect, and answered my questions. 

For actual infusions, my (male) chemo nurse was great. Hope your BF gets someone like I had. 

[LexieCat]

Yup, I couldn't be happier with my infusion nurses (I go to a big hospital so no telling who I'll get, but they've all been fantastic).

One thing, if he seems distressed by anything his daughter says/does--remind him he doesn't HAVE to have anyone with him. Frankly, getting chemo is pretty boring, and it's gotta be even more boring to watch someone else get it. I had my daughter with me only 2-3 times before she moved home and now I go alone. Not a big deal--you sit in a chair/recliner with an IV in your arm or with your port connected to the infusion machine. If he's getting the triplet, he'll most likely get an infusion of anti-nausea meds first, then Carboplatin, Alimta, and Keytruda. Maybe 3-4 hours total, at the most. He can bring a book or a phone/tablet with headphones. Chemo doesn't make you sick/dizzy, so if he's otherwise able to drive, he can drive himself.

Another thing I do is record, on my phone, all my visits with the oncologist or his Nurse Practitioner (with their permission), so I don't have to worry about taking notes. 

[Jennedy]

I am not allowed to have anyone with me for my chemo treatments. My husband is allowed in for my meeting with the Oncologist or NP. 

Like the others, my infusion nurses have been great. I was getting an infusion of Zometa every 4 wks, before I started the triplet. Now, they will be combined. I had a book or book on tape, adult coloring book, puzzles with me to keep me occupied.