Melanoma

A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

Melanoma drugs,. Can they cause memory loss

PAC
Posted by

Hello, my husband has the Braff  gene melanoma and has been on .Dafrenib and tremetanib

For about 10 months, . He suffered bad pain from arthralgia caused by the drugs

But apart from losing a lot of weight because of poor appetite tand fatigue they were the only side effects

Which was wonderful, . consultant has now given him a 2 week break from meds before putting him on 2 new drugs

Unfortunately he has started showing dementia type memory loss and it is worrying me because he was so active before these drugs

Is this normal  with these drugs, .If so will it get worse on new drugs, .thank you for reading my waffle. P.A.C

latchbrook
Posted by

Hi and a warm welcome to the online community

I'm not taking this combination of drugs but there are others on here who are and I hope they'll be along to talk to you shortly. 

I've found this information about side effects from taking Dafrafenib and Trametinib and I can't see that it mentions dementia type memory loss. Have you told your husband's SCNS about this yet? If not then I'd urge you to contact him/her as soon as possible.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

PAC
Posted by

Hello Latchbrook,. Thank you for welcome, . Yes I had looked too and couldn't find anything, .I dont   know if it could be coming off the drugs for a week or a combination of both,  it is worrying me . We are seeing consultant next Monday about new drugs so will mention it then x

PAC
Posted by

Hello again Latchbrook, .just wanted to update you on my husband's memory loss

Problem,.  I did contact the Mcmillan nurse  to ask about it and if it was possibly

 The drugs, . She wasn't sure if they would be affecting him that way but would ask the doc next day to book a brain scan for him but if anything untoward happened take him to hospital 

While I was talking to her my husband  unbeknown to me had had a seizure in our library and was in hospital on a life support machine

Please anyone who is concerned the way I was about small but significant changes in behaviour, .get it checked out quickly,

I left it too long .2 to 3 weeks

KTatHome
Posted by

Dear , I’m so sorry to read your post, I’m hoping your husband is getting the best care possible, and that you are coping ok.

KT 

PAC
Posted by

Thank you KT,. On a roller coaster. At the moment but know I won't have my old husband back again,. Can't stop crying when I wake up 

And then it goes away Andi i get on with what has to be done,  I go to the hospital and stroke his arm and I am off again for a few minutes

I feel angry that his misdiagnosis initially was misdiagnosed, I feel angry that he hadn't had a recent head scan, I feel angry that they took him off his meds for two weeks cold turkey before starting a new drug next Monday.  None of it will make any difference now but it helps

Me for a while.

Sorry for ranting and than you for kind message x

KTatHome
Posted by

Oh , no need to be sorry this community is here to help you and understands the need to rant, seek experience information and support, as well as celebrate the good days. I hope you don’t mind me making some suggestions on how you could make even better use of this site.

I noticed you only belong to this group, and as you are feeling lots of emotions at the moment you might find the next links to groups for careers useful either now or in the future if you haven’t found them yet. Please forgive the second link as I can not tell what position your husband is in from your words you know you won’t get your old husband back.

community.macmillan.org.uk/.../discussions

community.macmillan.org.uk/.../discussions

It will also help to put a few words in your profile but I realise that can be a painful process sometimes, but at others it can get your thoughts in order as to what help you might need. Another way is to have a good talk to the Macmillan support line who will understand what your going through and will give a good ear to listen and might be able to make suggestions as to help you might need. 

(The Macmillan Support Line can help with clinical, practical and financial information. Please call us on 0808 808 00 00 (7 days a week, 8am-8pm). )

It is difficult changing treatments there always needs to be a gap, I’ve been through that change myself. I’m wondering if they are able to get his strength back up with perhaps the use of steroids to enable that change of treatment to go ahead or they may have some surgery in mind now. It may well be a period of uncertainty and hope you. 

Im wanting to send you a gentle virtual hug as it is often much much harder for the people giving support than it is for the patient. 

My best wishes to you

KT 

PAC
Posted by

Thank you so much for that,. Yes I know he is being well looked sfter, .They are so caring and gentle with him and they don't know exactly what caused the seizures .that put him on life support they are looking down all avenues, .we don't know what level of consciousness he has either at tnt moment his eyes are open but we don't know if he can see us or hear us, .thank you for hug

latchbrook
Posted by

Oh I'm so sorry to hear about your husband.

Hopefully, they'll be able to find out what caused the seizures. 

You've been given some excellent advice by KTatHome and I agree that you might benefit from joining one of the groups she's suggested. 

Take care of yourself 

((hugs))

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

PAC
Posted by

He is intubated again after being off for a day but he is uncommunicative , .they now think the cancer has gone to his brain

And affecting the speech and communication area, .he broke 2 vertibra in his neck when he fell , which makes it difficult moving him

Because of paralysis, they also spoke to us about resuscitation, which was very difficult

They have mentioned doing a brain scan each day but still haven't done it yet supposedly because of complications,

I am utterly distraught

Sailor2
Posted by

Hi PAC,

I just read your posts about your husbands condition.  I wish there was something I could do or say that would change this, but as I can't please know that I am thinking of you at this awfully sad time.

J

Don't wait for your ship to come in, swim out and find it!

PAC
Posted by

Thank you sailor, all hugs much appreciated xx

latchbrook
Posted by

Sending more (((hugs))) your way

I'm sure the hospital will be doing everything they can for him.

xx

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

PAC
Posted by

Yes they are darling,   they are very kind and gentle with him,

It is just such a shock when the meds had bee working on the tumors

And had been successfully damming them to hell, .giving us hope 

He had coped  well with few side effects, didn't expect such a harsh

And cruel  outcome after that

Thank you for the hugs x

Teetee
Posted by

Big hugs to you . Please know I am thinking of you.

Teetee xx