Dealing with side effects

Terminal illness
#1

I am on a new drug called Everolilmus, along with Examestene and have been on this for nearly 6 weeks now. I have had big problems with its side effects and today is a bad day when I could not get back to sleep as I had the awful feeling of despair and being smothered. Its a horrible feeling and I had to get up and get on with things when I normally, as a rule, sleep in until 10.30 until 11.

I spoke to my Oncologist about the side effects as I get breathlessness, dry mouth, dry skin, rashes, headaches, sore mouth and the like and it has affected my quality of life. I was told the benefits of the drug outweigh the side effects and because now Everolimus is on the list of drugs now no longer available - they cant take me off it because they can never put me back on. So I have to grin and bear it.

Some days are good but today is one of my not so good days. I have been lucky since I was diagnosed that with all the drugs they have put me on, I never had any side effects like this. I knew it was only a matter of time for me, but life is cruel. We have to fight daily our cancers and what it is doing to us, but also to deal with the side effects too!! I am not one to moan, I can assure you but today it has just got to me. I am a fighter but there are days when the fighting gets to be hard. Cancer has a lot to answer for especially like many of us, when you look normal on the outside but on the inside, you feel yuk! Sorry for the sermon, but I wanted to get this off my chest and hope that I can help others out there feeling as I do, because you are not alone.

#2

Hi Cookie 17

Sorry I’ve only just seen your post. My husband too suffered with a whole list of side effects from the various chemo drugs, especially Oxilaplatin.

Ask your Oncologist/ McMillan nurse if Epaderm Cream could be helpful for your rash. The cream is best is used immediately after washing as it moisturises and softens your skin.

For the sore mouth - we always kept a tin with soft mints and various boiled sweets.

I think that’s precisely what the community is here for. To open up and share your thoughts, fears, ideas etc. We’re all in the same boat, unfortunately some of us have already lost a loved one - it doesn’t mean we don’t feel your pain and anguish. Please don’t feel you’re on your own and don’t bottle things up. Even if we can’t do anything to help, just knowing there are people you can share your feelings with should help you. Good luck.

#3

Dear Libby, thank you for your message. It was great to receive your advice for the cream and sore mouth. Also thank you so much for the last paragraph. That brought me to tears as I am not one as a rule to have a rant, I usually keep things bottled up but I know that is not good for me so I will try and share more on here to help vent my feelings and frustration over things. Your message was just the tonic I needed. Have a good day.
Regards
Cookie17

#4

Dear Cookie17. How are you feeling today. I’ve been thinking of you and hope the side effects aren’t too bad. How often do you have chemo? Please feel free to have a rant any time you wish. You can email me if you wish I am only too aware of what you’re going through and if I can help in any way I’ll be only too happy to do so.
Take care, Libby x

#5

Dear Libby,

Thank you for your lovely message. I am now off chemo waiting clinical trials or to try a new chemotherapy. I have seen what they have on offer in Barts and wait to hear from Royal Marsden. There is a lot to read up on and decide what is best for me. I feel it is a big decision to try and make on your own whether one is strong and brave enough to trial a new drug or play safe with something already tried and hope it works for you.

I have been on oral chemo as the last time they tried intravenously, it failed as the chemo was more detrimental to my bood and immune system and kept knocking it back dangerously low so that was stopped.

I am scared because with all this waiting around I dont know what the tumors in my liver are doing and whether they are growing or staying put because I am taking nothing at the moment to stop them. I feel at times life for us cancer patients is so unfair, so much is expected of one as if we dont have enough to deal with with just having the cancer itself, wherever it is in our bodies.

Sorry Libby, I am rambling but I get so frustrated and what is happening to me, I feel I have changed since I took Everolimus along with Examestene and have lost the old me. I dont think I will ever get her back, the drugs have seen to that. But I try so much for my husband’s sake as I know it hurts him to see me this way and there is nothing he can do to help but try and understand. Cancer sucks and I am usually the positive one but I have my days too like most people when it gets too much and I cant be brave all the time.

I am so sorry for this rambling rant. Thank you for listening Libby.
Cookie17

#6

Dear Cookie

It’s not easy making decisions on your treatment I know. In John’s case we didn’t have much choice so we grabbed the offer of the Clinical Trial Avastin along with Oxilaplatin and 5FU that was in 2012. There’s always new drugs all the time I hope whatever you try works for you.

You wouldn’t be human if you weren’t scared. John’s last trial was a double blind placebo and that really was scary, even the Oncologist didn’t know if John was getting the trial drug or a placebo.

Cancer does suck and it makes me sad each time I hear about someone new diagnosed. When John’s cancer returned in 2011 we were shocked because the previous 5 years after the operation and chemo were good. He didn’t feel ill and the 5 year check was just a formality or so we thought. I wasn’t until January 2012 they finally confirmed it after a PET Scan.

Although John loved reading, he didn’t like reading about the drugs/side effects. I’d do all the reading and high light the important bits John needed to read and side effects he had to look out for.

People not involved with cancer haven’t got a clue what you go through. In fact even us Carers don’t really know the full extent of your pain and discomfort because you try to hide it sometimes so as not to cause us more distress.

I only had to look at John to know something wasn’t right. Once he’d fallen over in the house but didn’t mention when I called because he didn’t want me rushing home from work. I called the district nurse and we ended up waiting for them till 10:30 pm.

I hope you find the best treatment for you.

Take care, look after yourself.
Libby

#7

Dear Libby

Hello again. Thank you for taking time out to talk to me on the items I have posted. They mean a lot to me to know you care enough to write back. I feel that you have an empathy if that is the right word with what I am going through and I find that spooky and yet reassuring that you can almost read my mind!! I am still waiting to hear from other hospital that I have been referred to to see what they have on offer before I make a decision. There seems to much to take in and to know what is right for me. No pressure!!

Take good care and I will keep you informed of developments when they occur.
Cookie

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