← Return to Started immunotherapy maintenance: What side effects can I expect?

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@lisakuehl

What type of cancer are you dealing with? My husband was on maintenance Alimta following a protocol of carboplatin/Alimta. By then end of the fourth cycle of combo meds, he was so run down that he was not able to recover. The maintenance Alimta did not prevent the spread of his pleural mesothelioma. His local oncologist told me, after my husband had died, that a recurrence of cancer is common following a treatment course. And his mesothelioma did come roaring back, into his only remaining healthy lung, within just a few short weeks. I don't recall any other of his cancer care team at Mayo saying that the cancer could be worse following treatment, Why don't doctors tell you these details before hand? I know that treatment can cure or aid many, but it can also accelerate death in many. If I had a do-over, I would have never agreed to putting him through any treatment at all. He was far worse off because of it and I cannot ever take that back.

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Replies to "What type of cancer are you dealing with? My husband was on maintenance Alimta following a..."

@lisakuehl- I am truly sorry for the loss of your husband. Losing a spouse is so difficult by itself, please don't beat yourself up about his treatments, or his decision to have them. After we are given a diagnosis of cancer, and one of the most difficult things to deal with is the loss of control of our lives. It's all up to trusting the medical field and at the mercy of Insurance companies. However, doctors can't read into the future. Also, there are no miracle drugs or drugs that work the same way for everyone. Doctors may not tell everyone all of the possibilities of certain drugs and their effects because that would be impossible. Also, there is one thing that no one can take away from us and that is hope. Any second-guessing this by his medical team would have been immoral.

Side-effects from treatments are often difficult and some have to be stopped. One of my doctors once said to me, "Chemical intervention is the ultimate blunt instrument", Medications have different effects, beyond their intended use, upon different people, then you can possibly predict. Normal biomolecules in normal biological systems have multiple uses and multiple effects."

Again I am very sorry for your loss. Following our doctor's recommendations is always recommended but the outcome of any cancer is always a guess, as are the treatments. All of the decisions that you and your husband made were together. Please don't carry this on your shoulders. Sometimes all we have is hope and for some of us, it is sustaining.

I hope that the memories of your time with your husband have sustained you and gone beyond his cancer.

Hugs to you and so very sorry for your loss. I am caretaker for my husband and a cancer survivor myself. There is no way to predict how a treatment will be for each person or what the 'right' answer is. There are no 'right' answers. There is an opportunity cost with each medical decision we make. I'm sorry your husband suffered, it's truly one of the hardest things there is, watching a loved one suffer and trying to make daily decisions about their care, but you made a good decisions and all you could do. There is much that our doctors don't know yet and that makes the whole process challenging for them and especially for patients. How lucky your husband was to have you at his side and I hope you'll get some peace soon. It's very difficult. I'm there right now and I know I'll have questions, misgivings and yes, some anger and concern about the process we are going through for my husband's lung cancer.

Your story is why I carry such a case of survivor's guilt where I constantly ask myself "why them?". I was a textbook case for the Ketruda/Alimta/Carboplatin initial course. My PD-L1 rating was an almost unheard of 100% so the Mayo team felt very positive going in and even more so after the first four treatments. I dare say the sad thing is that we are near the opposite ends of the healing spectrum. I don't know much about Mesothelioma other than it is far more insidious than other lung cancers. I start each day with the hope that today will be the day that new therapy comes along for all cancers that works as well as immunotherapy has for some of us.

I’m sorry for your loss. Loss of our mates is such a horrible experience and I’m now facing that reality. In our circumstance my husband was already near death when his diagnosis was made in late January. We had no clue due to his otherwise extremely good health. Mesothelioma is cruel. Since his cancer is so pervasive, in both lungs and metastatic, we will grab at what we can and Mayo has been so very compassionate and thorough in our case. May you not hold yourself responsible. We all act with the best medical advice and due to a persons genetic and health differences it must be very difficult to predict outcome. We are almost two months past the ER/hospitalization where his diagnosis was made. Mayo has made that possible for us. Without it he would not have survived the 10liters of fluid pulled from his pleural effusion.