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Hello, I know many of you have been following my thread on my husband's health. He has COPD, PKD, a hip replacement, and Stage IIIB lung cancer two years ago. He had immunotherapy, proton radiation (this scarred his lungs) and chemo. Well, they have found a spot again on his lungs looking like the dreaded C word. It would be the opposite lung of the original meaning the stupid thing metatized. I wouldn't mind him having immunotherapy except we had to borrow $5,000 to get the Imfinizi shots (yes, they are still hounding us). I don't think his body could handle radiation and we also had to take out loans to do proton therapy. This sucks!!!

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You can't make decisions w/o all the facts, so stop trying to. Speak to your doctor about anti anxiety medication for yourself, I've had good results with Paxil.

I have stage 4 cancer myself which is currently in remission from immunotherapy. But, if the cancer comes back, I am NOT a candidate for any type of immunotherapy again because of the toxic effects that are still ongoing a year later from the first round. So where does that leave me? Unless the new cancer can be ablated from one spot, it's time for hospice. Immunotherapy and other cancer treatments are not w/o side effects or risk of death, either. Nothing is free in life.

If DHs tests come back positive, you'll speak to his doctor about options, carefully weighing the pros and cons of taking life extending measures with his health profile being what it is.

In the meantime, ask yourself this question as often as necessary: What is wrong at this very moment?

The answer is Nothing.

Live in the moment and enjoy it, without projecting the future (which is anxiety) or dwelling in the past (which is depression). The only moment that's REAL is NOW. Once we embrace that concept, life becomes easier.
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In your profile u also say he is on dialysis and at one time may lose his leg so diabetes is involved too and DH is only 61?

Its been 30 yrs since my FIL died of lung cancer, his second bout. They could not use the same chemo as the first bout because it had only been 3 yrs. Your DH just has so much wrong with him for a 61 yr old. Drs have to tell you what is available and should tell you all the bad too so you can make an informed decision. And that decision should be ur husbands.

Was the 5k your deductable and they wanted that upfront? With my grandson, that deductable was partially paid for by a charity in the hospital. It was a big well known hospital. He had been making payments, before he found out about the charity. Out of 6k, he had about 3k left the charity paid all but $300 which I covered so he had a clean slate. So, check it out to see if any hospitals near you offer help for the expenses you can't afford. Call Office of Aging to see if there are any programs that can help.

Me, I don't like Go Fund Me's. If I know the family, I give directly to them.
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DoggieMom86 Feb 13, 2024
Yes, he is 61 and I am 37. He is not diabetic, but has had a wound on his leg for over a year which was a venenous ulcer. He was being treated by a wound doctor. Well, this wound got infected and is now infected to the bone, hence the need for the amputation. The 5K was paid by me taking out a loan and getting most of the loan paid down. He has Medicare which covered the proton therapy after the deductible and same for immunotherapy.

I think a lot of what is going on is related to his PKD, they think most of the fluid in his lungs is unless the cancer has made its return. Stage IIIB is right before the worst stage. It was only one lung and had not spread. He made some rather bad lifestyle choices in life including smoking heavily for 40+ years and being overweight. His whole family is kind of a list of tragedy: One sister had a brain tumor at age 8. It was removed, but for years she had a shunt. When she was 65 they removed the shunt, said she didn't need it and she died. Linda, second oldest sister died of cancer after ten years. Pat, his nephew, 45 died of liver cirrosis. His sister Delores recently battled ovarian cancer. His daughter, Ashlann, 31, died of an OD of rubbing alchol. His mother died of a heart attack in her 60s and his father lung cancer in his late 70s. So yeah, his family has a hard luck streak on the health side.

I think if he hadn't smoked then a lot of the health problems such as the COPD would not be around and most likely not, the lung cancer. The kidney disease was genetic, so we would be dealing with that one way or the other.
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Yes, it does.
He will make his own decisions.
You have told us a lot, and so far he wishes to fight like crazy. You will have to support that if it is what he wishes. But were I you I would now meet with his doctors so that they can HONESTLY approach him about the benefits of such a fight versus the benefits of Hospice.
Allow him his own choice but be CERTAIN he has all the options from the medical team for palliative and Hospice made absolutely clear to him, as well as his chances of any fight here being won, ultimately.

This must be his OWN decision as an individual. I am also facing down a second occurance of cancer. I have made it clear I will do THIS MUCH and no more. Yes, to a lumpectomy. No to removal of nodes, no to chemo, no to radiation. And it has LONG been clear to my MD I am ready to go with the good drugs, and with MAiD laws in my state. That is MY choice and I am great with it and have discussed with MD and with family even BEFORE recurrance of a cancer.
As a nurse and as a patient I will tell you this must be his choice. Allow him to speak his own truth.
I am so sorry.
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DoggieMom86 Feb 13, 2024
I appreciate your honesty. I will support him whatever decision he makes, but like you said I want to be sure he has all info before it comes to that. I am only speaking on my side knowing how hard the first go around was for him. I believe he dropped about one hundred pounds. He lost more weight because the hip replacement came after and turned a lot of muscles to mush. I am not rushing into any decision, but more or less just venting about how crummy it all is. I thank you for you candor.
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My thought on the proton therapy is that he already has breathing issues with his COPD and scarring on his right lung from proton radiation - no doubt if he does the radiation on the left lung then he will get scarring on that too. Both of which will contribute to breathing problems. Something to talk about with your doctor about pros and cons and how much it will damage him if he does it.

Plus you say you are unable to borrow the money you would need to do the proton therapy so that option is pretty much off the table.

For the Imfinzi it sounds like your current oncologist is saying that it is free but you have to be in a trial and your husband is not a candidate for any trials so this is not an option. What would it take for the insurance to cover it a second time?

I hope you can find a solution for your husband that works.
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Before you take on this additional worry, why don't you just wait and see what the final results are from his further testing to see whether or not it actually is cancer or like many folks I know, just spots on their lungs to keep an eye on? Just because your husband had cancer before doesn't necessarily mean that it's come back.
My late husband had a spot of concern on one of his lungs and we had to have it looked at every 6 months for 2 years. It never changed so he was discharged from having to come back.
From all of your posts I can see that you are a worrier and I'm sure in some instances you have valid reason to be. But worrying never gets anyone anywhere.
It's been said that worrying is like rocking in a rocking chair, it gives you something to do, but it gets you nowhere.
Instead of worrying I would recommend praying about it. Now that will get you somewhere and give you peace for the journey you're on with your husband.
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DoggieMom86 Feb 13, 2024
You have me begged to a T on worry. I have anxiety disorder and a bunch of others and have always been a worrier. I kind of come from a family of worriers. My autism likes me to "plan ahead" and this sort of thing is a day-by-day thing which tends to make my anxiety go up. I am not saying it's anyone's fault, it's the way it is with healthcare. I hope my husband just overreacted. I knew the possibility was there as the lung doctor said there was a spot in his lung they had to test. I think the doctor laid out all the options and the worst possible one is of course cancer. I hope it's not. I understand this is all out of my hands and I am praying. I am not angry at anyone. The diseases yes, people, no. I do not blame God either for any of this but rather our bodies breaking down. My husband did make choices which we know lead to the cancer, smoking for 40+ years.
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I honestly could not borrow that amount of money again, but he did well on the immunotherapy. What is bad it that we found a way to get the Imfinzi for free but the oncologist refused it saying since they hadn't gotten the trial they wouldn't take it. I hope it is just a small spot and that the cancer hasn't attached itself anywhere else. He can tolerate chemo fine, so that's an option and if we can find a way for insurance to okay immunotherapy than that could be done to. Yes, it is insane the amount they wanted. For proton therapy we had to have $5,000 up front before insurance covered it and the same for Imfinizi. This country really shouldn't punish people with cancer by making the drugs insanely expensive. He did really well the first time after five sessions of proton therapy his tumor had shrunk by half (the doctor said the fastest he'd ever seen) and the immunotherapy had it gone entirely.

He could not get a lung removed because of his COPD he would not be able to breathe well enough. His right lung is scarred now from proton radiation so that is even less of a probability.
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Geaton777 Feb 13, 2024
Have you thought about a GoFundMe campaign? My son's 8th grade acquaintance has a rare disease and he started a campaign and was able to mostly (or fully?) fund his treatment. I got the donation request through my son and I was happy to contribute, even though I didn't know this guy well and my son wasn't *that* close to him. It couldn't hurt? I don't know the income/tax exposure part of this, if there is one.
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I'm concerned that you're going into debt for his treatments. Regardless of what his final decision is, I'm hoping you are talking to an estate or financial planner so that *if* he passes, you personally are not left in the hole financially.

I'm so sorry for these circumstances. ((hug))
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If he's just in his 60's and not cognitively impaired then the decision to seek further treatment or not is his to make, then it's up to you to support that choice. You're right, it definitely sucks 🤗
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