Update Change to Eribulin

[Red71]

Two weeks ago I was put on Eribulin IV chemo, told its side effects would be much worse than my po meds. I ended up in the hospital with a white count down to almost zero, muccositis ( inflammation of the mucous membranes). The muccositis hurt so bad I couldn’t drink so I was dehydrated as well. After two days of treatment I was allowed to go home and my mouth didn’t hurt as bad. The staff at the hospital were great but I can’t say much for their food. Oatmeal and mashed potatoes and ice cream were about the only thing I could eat! Tried a creamy mashed potato soup the first night. Don’t know what it was but it wasn’t creamy or potato! When I mentioned it to the nurses the next day they all cringed and told me they should have warned me.

This morning I woke up to my hair falling out in the shower, whole handfuls of it. My oncologist promised me I wouldn’t lose my hair on this one. I’m so disappointed. I actually cried on my husbands shoulder and I’m not a crier.

This is the second time I’ve ended up in the hospital after a drug change. I hope the next time they realize that they can’t give me the full dosage. I’m pretty discouraged and tired today. I’m sure I’ll have better days but today isn’t one of them!

Elaine

[Iwasborntodothis]

Oh my goodness I can’t say anything but this SUCKS! I wish I could give you a hug so I will 🙏 instead.

[Red71 in reply to Iwasborntodothis]

All virtual hugs are soooo welcome right now! Thank you!

[Arisgram]

Oh Elaine! It just sucks. All of it. It sucks, and yours is sucking more than usual. You cry on his shoulder when you need to. I'm so sorry you're having a tough time with this transition. I hope you have some bright moments in the very near future. Much love, Andi

[MyMiracle13]

Oh Elaine I am sorry you have to go through this. You are in my daily prayers and I hope that when the dose of the Eribulin is adjusted that it will work wonders for you

[Rotagirl]

Dear Elaine, so sorry you are going through this nightmare. So pleased you have support. Sending you hugs from the UK xx Fay

[stardust1965]

Elaine

I’m so sorry you are going through this rough patch. I hope you can find the right dose that works for you and for a long time.

Sending big hugs from the U.K. Vicki 🤗

[MaryCos]

I am so sorry to hear how hard this is for you, Elaine. Hoping you are feeling better as time goes on. Hang in there! ❤️

[Bettybuckets]

Sandra- thanks for that hopeful message. I dread having to change... but we all face doing it when treatments fail snd we all hope the next line of therapy will be tolerable and LAST for a long time. So thanks for reminding us all of the goal!

[Bettybuckets]

Elaine- thank you for sharing and bringing our fears to light. Let’s just all pray together that this works for you.

[Hidden]

Creamy mashed potato soup?????? Never heard of it. If it was made in the UK in the nhs it would be a packet mix, so hope your hospital kitchens are better in the US!!What a shock to find your hair falling out when you weren’t prepared for it. I find these are the things that hurt most, when it is a shock to the system. I am sure now you are back at home you will start feeling better about things. Please know we are all sending you all our support

Clare

[Red71 in reply to Hidden]

You are right, it was the shock of finding my hand full of hair that did me in. I just wasn’t prepared. I’m feeling much better after a day getting used to the idea. I keep telling my husband I should just shave it, he wants me to let it fall out naturally. I think he is hoping I’ll have some fringe left, but that reminds me of a bald man with a fringe! Lol!

[Hidden in reply to Red71]

I am sure you will look great either way. Clare x

[AnnaP668]

What a miserable experience! I don't know any hospital food that is tasty, but yours sounds awful. Please remind them on your next med change that you are super sensitive! Hope you feel much better soon.

Ann

[RLN-overcomer]

Sister/warrior I am sooooo sorry to hear you are having a difficult time with your treatment drug/ dose. I can only pray you are feeling better, and that the next treatment won't have these horrible side effects. 🙏😊

[Red71]

Thanks everyone for your positive messages. I got my hair cut to about 2 inches long today. I have a little more hair left in the back than the front, so we didn’t shave it completely off. Went out to see my neighbors who have been away on a trip for a week: no one fell over from shock or laughing! I have such great neighbors. One is expecting a baby in 2 days so we are all enjoying the suspense, except for mom! I’m recovering, now just have to learn to deal with a cold head since I had such thick hair before!

[LotusAFlower]

I am just now reading this and I’m so sorry it sounds so awful. I hope a month later you are getting some relief and able to eat better foods than the hospital variety … gentle hugs your way…