Starting immunotherapy Keytruda

I am on Keytruda and Alimta every 3 weeks. I am on round 30 now. I have had lots of side effects but they never last long and they are manageable. The recurring ones are fatigue and some mild bone aches. My side effects usually hit on day 4 and last 3 or 4 days. I have my infusion set up that most of my bad days will be on the weekend and I can just sleep if I want to. Other side effects have been, shortness of breath, hands cold, ears ring, sea legs, feet swollen. Now those have maybe happened 2x in the last 2 years. Nothing extremely bad to where I would want to stop taking it. I did end up in the hospital and thought for sure it was pneumonitis (lots of others have reported getting this) from the Keytruda but the Dr's said that it was not so we have continued using it. I have had clear scans for 2 years because of it.

I've been on keytruda once every 6 weeks since July. Only minor side effects. A rash that was handled by my dermatologist and bouts of extreme fatigue. Not all the time but just for a couple of hours occasionally. Other than that, it's been ok.

My husband has had 6 Keytruda infusion every 3 weeks thus far. He will be on it 1-2 years per Oncologist. He does get fatigue for several days after infusion (make sue to eat or drink protein), and experiences gi distress for a week. But all this is doable.

Hi Tomm1951,
It has been 14 years since my husband was diagnosed with Stage 4 lung cancer. However, he received Keytruda treatments and almost died. He got Pancreatitis which is a known side effect of Keytruda. It was because of our very good primary doctor and prayers, that he got to the right specialist and after a long battle, my husband was fine. However, he said that he would never have another Keytruda treatment. The cancer doctors didn't like that decision but it was my husband's body and money! (Keytruda cost $25,000 per infusion!) He received two infusions per month. My husband did great after that for quite a while. He did die of lung cancer two months ago. I really believe that if my husband had continued getting Keytruda he would have died sooner.

I would suggest doing as much research on Keytruda as you can before you make a decision. Don't just take what happened to my husband as the only result. Everyone is different when it comes to medication. Once you have a lot of information, then you can decide what is best for you. Pray about it and God will direct you.
I'll remember you in my prayers.
PML

I'm sorry to hear about both your husband's experience as well as his death. I'm getting ready to start Keytruda also and I'm having concerns about possible side effects as well. I understand that some people tolerate it and others don't, and there's no way of knowing what to expect from it in advance. How many treatments did your husband have before he developed pancreatitis and how long did it take him to recover from it? Also, did he not have health insurance, which meant he had to pay such a large sum out of pocket? I've read that Merck will often help supplement the cost.

Thanks for your post. I am so very sorry for your loss.
My husband has had 6 Keytruda infusions thus far.
- Do you remember after how many doses your husband developed pancreatitis?
- Are you saying that after he stopped Keytruda he lived 14 years before developing lung cancer again?

Hi abob,
My husband had three doses but he was having bad symptoms from the beginning. Keytruda was a new expensive drug at that time so the doctors were pushing it. We trusted their recommendations but my husband regretted it when he became so sick and almost died. He got down to 120 lbs. and couldn't hardly eat anything! Plus he felt terrible. It was awful! But getting to the right specialist and getting correct medication for Pancreatitis and lots of prayers, he recovered.

When my husband was diagnosed with lung cancer, he was only expected to live 5 years. However, he lived 14 years thanks to a lot of prayers, good food including good quality red meat and a quiet life style; staying away from crowds. Also he did not have chemotherapy or Keytruda.

I'll say a prayer for your husband. I hope he does well.
PML

Thanks so much for your reply. I am very sorry for your loss, but I’m glad you and he had 14 years with no treatments. I hope my husband will continue to manage his treatments so that he reaches the magic 5 year mark. It’s not even been 1 full year yet and he’s/we’ve been through so much.

Hi abob,
I'm sorry that you and your husband are going through issues with his cancer treatments. Perhaps, your husband should take some time away from the treatments for a while and see what condition he is in. Possibly his body is getting too much medication. That can happen. We are all separate individuals and react differently to medications. The doctor may try and talk your husband out of quitting even for only a short time. However, it's your husband's choice. It's his body and his money!
I wish you and your husband the best. I will remember you both in my prayers.
PML

Hi dougmck,
My husband had three treatments of Keytruda but he started having symptoms from the first. It took him about 7 months to completely recover from Pancreatitis. He refused any further Keytruda treatments and prior to this he refused anymore chemotherapy treatments also because he was too sick from them. He was only supposed to live 5 years when he was first diagnosed. However, he lived 14 years thanks to a lot of prayers, good food including good quality red meat and a quiet life style; staying away from crowds. I would suggest doing a lot of research before you get the treatments. That way you can make a decision that fits you. The Mayo Clinic is a good place to start and just do a search on Google for "Keytruda side effects". It will give you a lot of places to research. Keytruda is also known as Pembrolizumab. You may see that in your research.

My husband had very good health insurance through his union. We didn't have to pay anything past the co-pay which was rather minimal. However, at $25,000 per infusion which are twice a month, how long is the insurance going to meet this cost with the number of cancer patients increasing? That medication can't cost the medical community that much.

I wish you the best. I will say a prayer for you.
PML