Carbo/Alimta while waiting on new biopsy results - 1252787

Sat, 01/19/2013 - 18:10

Hello all you amazing cancer warriors- on Jan. 8th we went up to MGH/Boston, encouraged by our local onc., for a consult to investigate any hopeful clinical trials for my husband, who has "acquired resistance" to tarceva. It is so unfortunate that Florida has nothing in the pipeline for clinical trials, but this is our reality. While at MGH, he decided to go ahead with another biopsy to identify if another mutation may be causing the resistance. Gratefully, his biopsy created no pain, no pneumothorax. Once the pathology report comes back (3 weeks), we will consider one of four clinical trials being offered. In the meantime, hubby has decided to give chemo a whirl. He will start with carbo/alimta on Friday (1/25), here in Florida. Of course, his onc. has prescribed a steroid, B12 and Folic Acid. Was wondering if any of you have any other pre/post care suggestions that you found helpful, as patients. For example, his appointment is at 9:30 AM - would you suggest he eats well or lightly, prior? Should he expect to go home after treatment or go back to work that day? (planned chemo on a friday so he can rest all weekend, afterward). Clearly, everyone is different, but he is a chemo virgin and any input from you fine folks is appreciated. Any advice for me is welcomed, too. Care giving post chemo is an important role. In truth, if there is anything I can do to make this time of treatment easier for him, I'm gonna do it--- even if you say doing the "hokey- pokey" dance minimizes the side effects, IF danced in front of him, during treatment- I'll do it. Gladly.
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43 y/o husband- Native American/Non Smoker - dx metastatic adenocarcinoma with EGFR+ mutation in 3/2012. 16x palliative radiation @ T7. Started Tarceva 4/2012 @ 150mg then reduced to 100mg due to overwhelming side effects. Was doing well until last CT in 11/2012 showed acquired resistance/ progression. Hoping for medical miracle.

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gn21

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

gn21

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!

catdander

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

heartspy

Gail & Catdander- thank you for your rapid replies! So kind of both of you.
Gail,Glad to hear your side effects were tolerable while on carbo/alimta. He decided to pass on the port, for now, his tx is 1x every 3 weeks. The CO 1686 trial is what appealled to us, as well. Will know more after Path report returns. I do hope you get the opportunity in Australia. Finally- your signature and cancer should switch places- for sure!! I have no signature prompt on my profile- I have to copy/paste bio everytime. I thought maybe those of us without cancer do not get a signature privilege. :)
CatDander- ginger in everythig is a great suggestion, too. I have ginger tea & peppermint tea- in case I can coax him to drink it, but sprinkling into certain foods, might be better. The trial FiestyD is on sounds very promising and I am thrilled she is doing so well on it. I have only been searching for trials that addressed acquired resistance to TKI's for EGFR+ patients. Not sure he is a candidate for Fiesty's trial, but you know I will investigate! :) We were shocked to find that the Moffitt center had no current clinical trials to offer, that would address my husbands criteria. Still remaining hopeful - thanks for the posts.
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43 y/o husband- Native American/Non Smoker - dx metastatic adenocarcinoma with EGFR+ mutation in 3/2012. 16x palliative radiation @ T7. Started Tarceva 4/2012 @ 150mg then reduced to 100mg due to overwhelming side effects. Was doing well until last CT in 11/2012 showed acquired resistance/ progression. Hoping for medical miracle.

Dr West

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

heartspy

Thanks for the lemon drop suggestion, Dr. West!
I was so concerned about coping with diarrhea that I fogot the opposite could be an issue. Thank you for bringing up that potential problem and offering a solution, as well. Always appreciate the good luck wishes, too.

certain spring

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.

heartspy

Dearest Certain: your input is very much appreciated. I am bewildered by my own tendency to go from wide awake to passed out on the couch within minutes of each other - and I am neither on chemo or a cancer patient. Fear exhaustion, I suppose. Hubby sleeps alot, now, which I highly encourage. Thank you for mentioning MGH, it was a very promising expereince and an outstanding team of support /knowledge. IF there is anyway I could blink and get you there in true "I Dream of Jeannie" fashion, I would. It is a 3 hour blink of a direct flight for us. Not too bad- although flying always makes me leary of germ infested people, places and things, we both escaped any additional illness. Thank You, germicide god.

catdander

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.

cards7up

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

heartspy

Hubby had his first chemo tx on Friday morning. He did very well and has remained mostly uneffected, so far. Staying well hydrated and rested! Hopefully, we hear back from MGH re: Path Report sometime this week. Trying to stay focused just on today and out of the fear ball that gets created by wandering into the future. I appreciated the helpful input from all you fine folks, I felt well prepared on the food/comfort front.
CatD: They kick non-patients out of the chemo room, so he was spared my Hokey-Pokey dance moves. :)
___________________________________________________________________________________
43 y/o husband- Native American/Non Smoker – dx metastatic adenocarcinoma with EGFR+ mutation in 3/2012. 16x palliative radiation @ T7. Started Tarceva 4/2012 @ 150mg then reduced to 100mg due to overwhelming side effects. Was doing well until last CT in 11/2012 showed acquired resistance/ progression. Hoping for medical miracle.

heartspy

Uh...that chemo thing was brutal on my husband. After I posted the above report, he became flattened by fatigue, aches and pukiness. As of yesterday, however, he is seemingly bouncing back. He was hungry, awake and laughing. He even shaved!! I do think they hit him hard with the dosage because he is young and thought well of it- but...they will have a hard time convincing him to do chemo again, as a result.
STILL waiting on word from Mass General...tick/tock, tick/tock.
My respect and gratitude to all of you who have gone before him and are willing to share yourselves with us.

catdander

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

Dr West

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