Carbo/Alimta while waiting on new biopsy results - 1252787

Hi there

Your husband and I are in a similar position. I had 2 good years on tarceva and pertuzumab. After slow progression we went to tarceva alone.rogression continued so onto new clinical trial of crizotinib and Dacomitinib. Managed 9 months on that, and showing progression again.

We are waiting for the new clinical trial of CO 1686 to come to Australia, expected in the next few months. We suspect T790 resistance, although this hasn't been confirmed via biopsy yet.

In the interim I have moved on to alimta and carboplatin chemo. I had my first infusion 2 weeks ago. No problems with the chemo at all. No nausea, vomiting, diarrhea, etc etc. I am tired, and tend to have a nap after getting up in the morning. Appetite is crap but, like most of us, I know I have to deal with that as weight loss is not a good option.

My husband drove me to first treatment (it is a 4 hour round trip) but I certainly could have driven and will do so next time.

I no longer work, but even when doing chemo the first time around (nearly 4 years ago) I took at least that day off.

So, for me, no real side effects other than fatigue, and I do enjoy a good nap.

Second treatment in 10 days.

Please let us all know how you go. Alimta is meant to be well tolerated so fingers crossed!

Gail

Oh, and by the way.

If it looks like IV chemo are going to be a regular part of your husbands treatment it is worth considering having a port installed. I had mine done 3.5 years ago and is the best thing I have done! No more yucky lines being put in the back of the hand. Makes for easy access, and is very easy to maintain.

Gail

Now I have to find out why my signature block has decided, again, to not making an appearance. I wish my cancer would go away as regularly as my signature block does!

I think the hokey pokey is a really good idea, but timing seems to be a very individual thing. :)
I'm not sure about typical side effects from alimta but the staff a the cancer center should go over the common problems to look for. Nausea drugs if used need to be given as directed. There's one type given in anticipation of being nauseous and one taken after becoming nauseous. So make sure he's taking or you're offering them accordingly. I got to know what to expect with D's nausea such as the 2nd and 3 day out from carbo (the first day after the IV anti meds still worked) and gave him the anti naus pill before he got up in the morning. That way by the time he got up 20 minutes later he was fine.
I put ginger in everything I thought it I could get away with.
Like you said It's something that you'll need to find out where his problems will be or not.

Any of the carbo/alimta pre and post drugs will be fairly typical.

I was looking at the trial FeistyD is on and found it in Jacksonville, FL. http://cancergrace.org/topic/update-on-feistyd-anti-pd-1-trial She updated on the 'No Mutations" thread the other day and is still doing very well.
Here's the trial. http://clinicaltrials.gov/show/NCT01295827

Just a few more things. If he has taste changes (not extremely common with that regimen), sometimes lemon drops can help with that. Also, the anti-nausea medicines can sometimes cause constipation, so many of my patients find that this ends up being one of their bigger challenges, but if they are proactive about taking colace regularly, typically twice daily, and also adding senokot once or twice daily as needed, people can often prevent this.

Good luck on both the chemo and the trial opportunities.

-Dr. West

I had carbo/gemzar and was bewildered both by my tendency to fall asleep on the sofa, and by some slightly weird taste/smell changes. I went right off tea and coffee but drank gallons of fruit juice. I suddenly became extremely keen on childhood foods - old-fashioned cereal and peanut butter. So be prepared for some unusual requests from your husband!
I hope he gets a lucky break with one of the trials at MGH. If I could go anywhere in the world, that's probably the place that I would go to.

hesartspy, I think your comment reveals just how difficult it is to tease apart from where our loved ones' symptoms come. I too have tended toward some uncommon symptoms that I've seen doctors scratch their heads about when mentioned by people with cancer. I think stress accounts for more than is giving its due.

I've often wondered about people here who use air travel for trials and what extra measures they take to keep them germ free. I'm thinking airliner wear such as a mask hidden in a turtle neck, or some such thing.

Last but not least, he needs to stay hydrated. I had carbo/alimta and did have the metallic taste. I found I couldn't eat spicy or acidic and that included my loved spaghetti. He'll find not too hot and not too cold works better as far as taste goes. Ginger is more for the taste and is helpful. I'd also ask if he'll be getting IV Benadryl. Alimta is also well known for allergy type symptoms-runny eyes and nose. And fatiuge. He may not feel anything first time around, but after the second he may start feeling side effects. Wishing you both the best. Take care, Judy

Good to hear things went well and that you're prepare for comfort support.
That's what
it's alllll
a'
bout

This is about when I gave in fully to western medicine and better living through chemistry. It's a brutal situation, don't be afraid to have a good long 2 way talk with his chemo nurses about what may work for him.
Much respect to you,
Janine

I'm sorry to hear it has been so hard. I would just emphasize that giving chemo is a process that can be refined for a given patient. Of course, that person can decide if they don't want any more, but the fact is that doses can be adjusted down, drugs can be switched to something likely to be better tolerated, and there are a lot of different kinds of chemo with different levels of intensity. There are also additional nausea medicines that can often be added.

In other words, I try to encourage people not to dismiss the concept of more treatment even if the first foray was unacceptable. For now, at least you can expect that he'll likely be feeling better over the coming couple of weeks.

-Dr. West