Serious mental health issues

Posted By
desmelwife
4/14/2019 8:29pm
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Replies: 12

Hello!

I’ve been absent for quite a while as I have been dealing with some serious problems with my husband. 

He started once a month Opdivo infusions in January. In February he started having severe insomnia for about 2 weeks. After that he became depressed and anxious. This became so bad that he had to take a leave of absence from work. He is self employed and has been off for almost 2 months now. We are close to depleting our savings and I will soon have to look at selling our house. 

His condition is definitely getting worse. He is constantly anxious and very paranoid. 

He has been seeing a psychiatrist and has been on an antidepressant and anti anxiety for about 6 weeks with no change in his condition. 

Recently my husband had his 4th infusion and the week after I have noticed an increase in his anxiety and depression. It was then that I started researching if this could be a side effect of the Opdivo. I have found several articles about serious mental health side effects  with interferon but nothing specific with Opdivo. However, depression is listed as a less frequent side effect. My husband is very sensitive to medication so I wonder if this could be a side effect?

Has anyone heard of side effects like this with Opdivo? I am desperate to get him better!!

Husband diagnosed with Desmoplastic Melanoma 10/18. Started Opdivo at Moffitt clinic 1/19.

SOLE - (4/15/2019 - 7:54am)

I am very sympathetic to what you and your husband are going through at this very moment. Let me start by saying first that I did not have a chance to receive any immunotherapy treatment (so far... sigh!) since my surgery because of:

1) I live in Canada where standard of care is not able to yet provide those real adjuvant immmunotherapies to patients

2) I do not qualify for clinical trials... WHenever I read someone saying: «my treatment now is going on a trial», I realize the full measure of this path not being available to me. Ever.

3) After much aggravation of a wrong initial stage 3b diagnosis, research and re-analysis, my WLE did not find any apparent lymph node involvment, making me stage 2b or likely 2c. (Back in 2016, this is like being said 50% alive in 5 years to something close to 80% alive in 5 years, according to AJCC 7th edition, back then)

Your husband has had a pretty bad tumour and receiving immunotherapy is very probably saving his life at this very moment, in my humble opinion. THe fact that he can receive it and is, is a very good thing. I am not going to dwell on how Opdivo works and the rest of it but rather comment on what you are struggling with.

6 months of dermatologist misdiagnosis, 20mm desmoplastic mel; that is very ominous. I had an amelanotic, nodular acral melanoma (where the sun never shines under my right foot of all places) of at least 2.85mm (meaning it's deeper than that but I'll never know), ulcerated, mitoses of at least 4mm, etc... 

I lost it. Completely. And profundly. Lost my friends and parents. My daughter. My partner. I began to loose my sanity and flipped completely. You see, nobody wants to die but being diagnosed with mel plays tricks with your mind. I lost mine. I did pretty much everything to ring the alarm bells around me and NO ONE heard me. My situation is different than yours, of course. I just want to testify to the harsh reality of what melanoma does to the spirit. My way out has been researching and finding every possibility there is to try and save my precious life. And I have gone to Australia, EUrope and the US to find a way. My sanity, or what was left of it needed to try and survive. Nothing close to me seemed to be available to help me. I lost it and attempted to my life twice. But I'm here to tell the story...

I suspect your husband has you as complete care giver. I mean, you take care of him completely AND research ways to help him out of his hole. THat latter part, I did not have. I had to research for myself all possible solutions. My partner could and would not «beleive» in what medicine had to offer. THat has been my path so far. So 2.5 years out, without anything but initial surgery and WLE, traditionally speaking, I have not had anything else. In complementary medicine terms, I did a lot bunch of shit though. Why? Cause I did not have anything else available for me. 

Here's what Id like to say to you. I dont know if Opdivo is able to induce mental health issues at all. I have not read about such s thing in 2.5 years. Bubbles and others are far more experienced that I and I hope they pitch in. But the mental health issue: could and is most probably just the initial shock. My initial shock lasted 2 years. Yep. And no meds helped but some sleeping pills. Do I get anxiety and panic attacks? At least once a day. Has it faded overtime? NOpe. Not yet. Is it difficult to sustain and live? I dont know of anything that is more difficult to live with at the moment (because I am still NED and not in any pain). PTSD is real. If meds are helping, good. Me, it did not. All the contrary. But I'm here to write about it. I have just NOW found a GOOD therapist (for me) I'm working with. She survived a plane crash 40 years ago. SHe knows about surviving and about being told you odds of not making it are pretty high.

But fortunately these days, you have immunotherapy available. I hope its working for your husband. And I would say, find a therapist. THe type that deals woth PTSD. Mught just help better than meds.

I wish you are able to find your way out. At any rate, if you find I can help further, dont hesitate to reach me personally. I have been in that hole. Pretty much like EVERYONE on this board also.

Best,

M

Hello to you,

I am so sorry to hear your husband is suffering mentally while going theough this treatment.

I suffered several years ago with interferon and by the end of the protocol was suicidal, and taken off of it.

I did not know that was a side effect of it actually.

I am 14 years out from my second bout with stage III and am about to have a scary biopy this Thirsday.

Don’t forget that insomnia get also cause mental symptoms big time, so is it the insomnia that caused the anxiety and depression which was causes by the meds?

Definitely talk to the oncologist along with the paych of course.

I am extremely sensitive to medication also. It is awful....

Prayers for you and your hubby as you navigate this journey.

Hugs

Jen

Sorry for the typos- and as mentioned above- the whole diagnosis can certainly cause this too....

I suffer depression and anxiety and am treated by a psychiatrist.

It took me probably 5 or more years to overcome the severity of the ptsd symptoms....

Now they have all rushed back with this impending diagnosis.

Prayers

Bubbles - (4/15/2019 - 9:36am)

I am sorry for what you and your husband are dealing with.  Melanoma alone was more than enough to deal with, wasn't it???!  I have followed the literature regarding all things melanoma for many, many years.  Including a zillion posts/articles regarding all the routine and strange side effects that immunotherapy in particular can cause: 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=side+effects+to+immunotherapy

I also took Opdivo for 2 1/2 years myself in an early Phase 1 study, as an NED Stage IV melanoma peep, long before its FDA approval, from 2010 to 2013.  That said, there is no significant indication that current immunotherapy used in melanoma treatment (Opdivo, Keytruda, or Yervoy) directly causes depression, anxiety or other mental health issues.  This is certainly not the case for interferon, which along with the knowledge that it makes no significant difference in melanoma survival and little in recurrence, but does frequently cause mental health issues ranging from depression to suicidal ideation, combined to result in my decision to decline it when it was offered to me in 2003 with my initial diagnosis of Stage 3b melanoma.  Now, can I tell you that Opdivo is abosolutely NOT playing a roll in your husband's current mental health struggles?  No, I cannot.  However, it is rather unlikely...though not impossible.  What is true, as 'sole' noted, the stress of a melanoma (or any cancer diagnosis) alone - is sufficient to cause significant depression, anxiety, and mental turmoil for many. 

Here is an article and post on that topic...with (hopefully) helpful links within: 

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

Beyond the link above and my writing on what to do and say for a cancer friend:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/what-to-say-and-doand-notfor-cancer.html  I have no perfect answers.  Seeking help through a counselor that works for the individual, as it seems you are already doing, can certainly be helpful.  Medication is beneficial for some.  Exercise, even just a walk outside, can help.  Focusing on something beyond yourself helps, because fixating on melanoma ain't no way to live!!!  Trust me, as someone who's been living in melanoma world for 16 YEARS!  AND THAT'S THE THING!!!!  More and more of us are dealing with melanoma as a chronic diease!  Is that fun?  NOPE!  Is that true for all of us?  Unfortunately, no again.  However, though it is easier to say than to put into someone elses' head...or even when those suffering with anxiety and depression know it cognitively, it can be hard to put it into action...LIVE!  NONE of us know how long we have.  None of us.  But, we have today.  I have made it through all these years by putting one foot in front of the other, focusing more on what I CAN do than on what I can't, and by trying to make the most I can of each day I have.  

Perhaps some of these words can reach your husband.  He is lucky to have you.  Melanoma certainly doesn't limit its impact to the person afflicted.  I wish you and your husband my best.  Celeste

jen.bren - (4/15/2019 - 10:14am)

Celeste,

I just want to say thank you for your words. 

Looks like we’ve both been dealing with it for 16 yrs. My first was 2002.

What was the longest stretch you were NED?

 

Bubbles - (4/15/2019 - 10:26am)

Stage 3b with cutaneous lesion and positive node in 2003.  Second primary, negative nodes in 2007.  Stage IV with lung, brain and tonsilar mets in 2010.  Opdivo 12/2010 - 6/2013.  No melanoma lesions since 2010.

Wow- that is awesome to be 9 years NED.

Love and Hope for all of us everyday.

❤️❤️

I also had trouble sleeping when I started Opdivo.  I don't know if it was because of the drug or because of the anxiety of it all.  I had to get on blood pressure medication, which also helped me sleep.  I also take Magnesium supplements with an evening meal.  It works like a muscle relaxer on me. 

The last thing, and probably the hardest to deal with, is acceptance.  Being stressed out and constantly worried will not solve anything.  Sometimes you just have to accept that you can't change your situation by yourself or by thinking about it all the time.

Mind, I'm not saying accept defeat or something like that.  Definitely don't give up.  Just have to learn to accept where you are and use that to plan on how to get where you want to be.

I hope you can figure it out sooner than later.  Good luck!

mary1233 - (4/16/2019 - 10:58am)

It sounds like both you and your husband are having to deal with more than any of us should ever have to deal with, I had to be treated for anxiety and depression after my diagnosis - the medication did not make them go away but it made it better for me. This was not due to Opdivo because I had chemotherapy.

My best to you.

Mary

 

MovingOn - (4/18/2019 - 12:31am)

Hi,

considerasking your husband if he would like to take 1/2 a Benadryl before bed each night. I did this after yervoy and through Keytruda and Opdivo. Non oncologists used to diagnose me with allergies if I would go into urgent care while on Yervoy and later Keytruda. So my oncologist suggested I take a Benadryl each night. It turns out that 1/2 a Benadryl was enough to lighten my reaction to the immunotherapy and to keep me asleep all night. 

Live heard of other immunotherapy patients being given Benadryl in order to better Handle the infusion.

2019 is a new year!

Things continue to get worse. My husband was Baker Acted over the weekend and now has been transferred over to the med-psych hospital unit. Psychiatrist and oncologist are involved as we believe this has to somehow be related to his cancer or treatment. I’ve been reading a lot about how so little is really known about these immunotherapies as they are still so very new. I strongly believe that his quick downward psychotic spiral has to be related to the immunotherapy. This is  far more than depression and anxiety from a cancer diagnosis. 

Husband diagnosed with Desmoplastic Melanoma 10/18. Started Opdivo at Moffitt clinic 1/19.