Combo immunotherapy and brain radiation

I hear you however you need to be aware that you are in no way alone. There are thousands of people going through what you are. Just reading the posts on this forum, shows you all that people and their families endure. In two weeks, it will be exactly one year since my stage IV diagnosis. Although I do not have metastases to the brain, I have had only two combo infusions, a liver injury and presently, I am on Opdivo only. I want you to know that you are stronger than what you give yourself credit for. Look at these bumps and hardships as only temporary and have a vision of the future. People can live with many side effects and diabetes is not a death sentence. I understand that you have been bombarded with so many things from every angle in a short period of time and you had no chance to adjust. Please give it time, breathe, take it one day at a time and above else remain positive and optimistic. You need to be aware that one can have terrific results even with only two or three of the combo infusions and your husband does not need to receive all four. Two months after starting therapy my tumors have shrunk 50 % and two months later, a further 30 %. Also, receiving radiation treatments seems to improve the results of future melanoma treatments.
Please remember that radiation of the brain causes temporary memory loss so what your husband is experiencing is completely normal and reversible.
In the meantime, try to find joy in small things, spend time with family enjoying music, walks, car drives, apple cider and donuts, etc. Find a few good friends and family members in whom you can confide in and who can be a source of support. Eventually, life will normalize and you will adjust finding your new normal. Whenever you feel like drop us a line and we will be here to lend an ear and provide support. Please remember, we are all in this together since no melanoma warrior is able to win the battle alone. Your husband and your children need your support and love now more than ever.
Wishing best results for your husband and strength and sunny skies for you!
Hugs,
Melanie

Hi Lydia,

You are definitely not alone in this. My husband will begin his radiotherapy and adjuvant immunotherapy in a few weeks time after having had a very aggressive tumor in his main salivary gland removed over 2 months ago. He is 55 years old. We have 3 children and have been married for over 26 years. I do not consider myself strong, and feel like how you described yourself in your post too frequently. However, reading the posts in this forum has helped me tremendously. I truly believe that you too will find the strength you need to help your husband, your children, and yourself deal with this situation.

With all my heartfelt wishes that your situation will improve soon,
Affected

Welcome Lydia. Sorry you need to be here. Sorry for all that you and your husband are going through. Still, as others noted, you are not alone – though I’m sure it very much feels that way. There are many amazing caregivers on this forum. I am sure they will respond to you soon.

For some concrete info, as others noted, side effects to immunotherapy can be a beast, but they can usually be manged and become more routine than they first seem to be. Additionally, radiation to the brain often causes the very symptoms you are describing (SRS and gamma knife less so….WBR more so). Swelling and other factors contribute. However, with time (and occasionally with steroids if needed) those troublesome signs of confusion and the other things you describe often improve. Still, it is very good that your docs are going to do a f/u MRI and CT to evaluate what is going on.

I am a Stage IV melanoma patient (post brain and lung mets) and know without a doubt that I would not be here today were it not for my husband and other dear ones. I am certain that many times, what he had to endure was much more difficult than what I did. I am certain, without a doubt, that your husband knows you are there for him, though he may not be able to express it just now.

Here is some research and writings on caregiver issues that may help….or at least let you know you are not alone in this…

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-friends-in-need-are-friends.html

Granted this was written from the perspective of the patient and not directed to our partners like you: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/what-to-say-and-doand-notfor-cancer.html But, I include it in case you have folks who might be willing to help, in case it may give you some ideas of how they CAN help you. It has always been hard for me to ask for help. But, I’ve always wanted to help others. So…if you do have folks who offer you assistance – take them up on it….and be specific about what would really help. Like…”Yes, it would be so helpful if you could mow the lawn on Friday.” OR… “Oh my goodness. YES! If you could drop off a casserole for dinner on Wednesday that would be great.” “If you could sit with my husband so that I could take a little walk and get a shower, it would be lovely.” Ask a friend to take your grocery list and pick up the items for you. Or, if you have the means, use a grocery delivery service. It’s not everything, but if you can get small breaks, then it may help make the big hard things a little easier to handle. If you do not have friends and family able to provide this sort of help – there may be church groups or cancer support groups in your area who can. If you don’t know where or who they are, your husband’s oncologist or hospital should have some social service personnel who can point you in the right direction. And, certainly reach out for therapy and/or a support group if you think you need it. It is hard – if not impossible – for caregivers to talk about all their fears with the patient, not to mention their children. So just having an uninvolved person to speak with sometimes helps ease a bit of the load. And in that vein – feel free to scream and rant here. We can’t fix it. But the wonderful caring peeps on this forum can listen and send you the best cyber hugs ever!!!

So….a big hug to you, your husband, and your kiddos. I wish you all my best. Celeste

Hi Lydia,

My wife had a melanoma removed from her leg in December 2016. Everything was clear: lymph nodes, scans, margins. 6 months later I had to take her to the ER on a Saturday night because she couldn’t walk. ER doctor told us she had two brain mets. In the following weeks she had brain surgery, gamma knife radiation treatments, and started immunotherapy. 8 days ago she finished her last infusion of immunotherapy (two years total treatment). She has no evidence of melanoma now and is doing great. Those first weeks were hell, but know there is hope and the new treatments (including those currently undergoing clinical trials) offer a good chance for success. Best wishes to you and your family. dave

Hi Lydia,

I had radiation to a brain met followed by 8 rounds of Nivo. I didn’t have whole brain radiation, it was targeted to a single met. I didn’t notice any mental issues myself, but my wife says that she thought I was acting a bit more “spacey” than usual. I’ll take her word for it, but I don’t know if the spacey-ness was due to the radiation, the immunotherapy, the overall stress of what I was going through, or some combination of those things. I was able to keep to my normal activities and didn’t miss any work back then, other than for scheduled medical appointments. After three Nivo treatments, I also developed type 1 diabetes (I did miss work for that hospital stay). I continued on Nivo another 5 treatments, before getting colitis (more missed work), which booted me off immunotherapy completely. The good news is that my scans have been stable since last November and my doctor believes that I have no active disease and that my long-term prognosis is highly favorable (they’re always hesitant to say “cured”).

I think there’s a good chance that your husband’s mental state is temporary. Let’s hope so. Also, as others have said, having a strong immunologic response (even if it’s something you DON”T want, like diabetes) is a good prognostic indicator that his immune system is revved up and fighting. At least that’s what I’ve been told and, from my own data point of one, it seems to hold true.

I know this is a very stressful time for you. Does your hospital offer any support groups for caregivers? Or is there someone there who can point you in the direction of supportive services? I know this is hard. Friends and family can offer some support but only someone who has been through this can really understand.

You can always come here. This is a great community, even if we can only offer virtual hugs. You are not alone.

Hello Lydia, i hope your husbands side effects subside and or get under control, reading your short bio, sounds like hes in Great hands at his clinic! I was diagnosed at age 39 close to your husbands age of what, 42? Im still here Lydia! “And” i was already staged at 3b when i was first diagnosed! Many surgerys and 3 topline immunal drugs later, im still Alive and VERY much in the fight against Melanoma, its my hobby along with Woodworking, iv accepted it…prayers your way, itll get better!

PS: you should think about changing your MRF name to FeelingLovedByMRF cuz you really are, your not alone, feeling alone is just a “Feeling” Lydia, a feeling doesnt hold weight half the time….