ongoing treatment resistant nause during carbo/alimta

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This topic contains 6 replies, has 3 voices, and was last updated by  kempten 1 month ago.

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January 17, 2018 at 3:34 pm  #1293806    

kempten

Hello again

I have received my 4th carbo/alimta treatment 22 days ago and chose to delay the 5th session due a case of the shingles.
They are healing nicely and the pain has faded . I was able to get by with little pain medication.
During my chemo I get the dexamethasone and an iv dose of prochlorperazine . I also take the dexamethasone the day before and the day after.

I feel wonderful during my chemo, full of energy and with a desire to eat. About 3 days later despite
prophylactic Ativan 0.5 mg and Prochlorperazine the nausea setts in and all thought of eating makes me feel like wanting to run to the bathroom to throw up, but I never do. This will last the entire time until I get my next dexamethasone fix .
I have not had a chemo treatment for 22 days but the nausea is continuing unabated . They tried different drugs on me ( Zofran ) but nothing seems to help accept for the dexa.
I already lost weight because I can’t stand the thought of eating. I do force myself though and have a few favorites that slowly also loose their attractiveness . I do drink enough fluids .

I’m also concerned about the risk of tardive dyskinesia if taking to much of this stuff
I’ve also been on 20 mg of Prozac for CFIDS for the past 23 years, which I’m now hooked on and which is a drug interacting negatively with many anti nausea meds .
I read that there is a profile of nausea treatment resistant patients. It seems to be genetic .
Female , increased nausea during pregnancy and rarely if ever drinks alcohol. That’s me.

Any suggestions of what else I can try ? How often do you encounter this ?

Sorry for the long message
Kempten

ps prolonged dexamethasone will cause severe GERD and the anti GERD meds cause me nause

January 18, 2018 at 1:32 pm  #1293821    
catdander forum moderator
catdander forum moderator

Hi Kemptem,

I’m so sorry about your ongoing symptoms of nausea. Have you tried aloxi or emend? Emend is now often given simultaneously with chemo. When my husband started cisplatin and etoposide emend was given the morning after. He did best when I woke him about 30 minutes before time to get up, give him the pill and have him stay in bed for at least the next 30 minutes. The difference was remarkable for him. The point is to get ahead of the nausea/before the steroid wears off. The problem I ran into was the affordability of the drug when he got it in pill form with a prescription. I was able to get the pills (even with insurance they were several hundred dollar a piece). A chemo nurse gave me a coupon to bring the cost down. Calling the pharma is also often helpful for getting a drug at a affordable cost.
Other things I found helpful for Don were adding bacon and or ginger to just about everything he ate. The drug magace in generic form was also very helpful in increasing his appetite. “Ensure Plus” and Publix’s version was often the only thing Don consumed when on Chemo and is still a staple in the house.

Carbo can be a bear for nausea. 4 cycles is the maximum number of cycles that have been proven beneficial and many oncologists go to 6 cycles just to go as far as possible. At 6 cycles hypersensitivity to the platinum becomes too likely to push much further. Stopping at 4 cycles would be very appropriate especially when having such severe side effects. Taking a break until progression would also be appropriate at this point. Hopefully the doublet will have given the cancer a kick in the butt for a bit. At progression a trial or alimta alone would be appropriate.

Here is a link to Dr. Harman’s video post on the subject which also includes a link to a transcript.

http://cancergrace.org/cancer-treatments/tag/chemotherapy-induced-nausea/

I hope you a feeling better soon.
All best,
Janine

January 18, 2018 at 5:30 pm  #1293824    

kempten

thank you so much for replying , Janine.

Stopping at 4 cycles and going on Alimta maintenance sounds so attractive right now . Normally I would push to the limit.
I will bring up the subject with my oncologist . I just had a CT done today . We will see how the carbo/alimta
is working so far .
I’m happy to hear that your husband was able to manage with the medications you suggested and the added bacon and ginger . The bacon might not work for me but I’ve been trying the ginger . I cant say it makes a difference for me unfortunately.
Thanks for including the link below .
I did do a little bit of research out of desperation and think I might just be one of those genetically predisposed patients that will suffer more with this particular side effect ??
Nausea is a still not fully understood phenomenon . I hope we will figure it all out soon .
Thank you again
Kempten

January 18, 2018 at 6:19 pm  #1293826    
catdander forum moderator
catdander forum moderator

I look forward to hearing about excellent scan results!

If you’ve not try the newest drugs like emend and aloxi don’t assume they won’t work. Some of the classes of drugs, not sure which, only work if taken before getting nauseous, I think emend fits into that class. Don had terrible trouble with his appetite and feelings of nausea, still does. I often wonder is it’s lasting effects of all the chemo. He’s always had a scant appetite but has never regained what it was before cancer. Bacon, for those who eat pork, if like a siren of appetite. Ginger has actually been shown to improve nausea. Since we like it I just use it as a spice whenever possible. Herbs and spices in general have nutritive properties we don’t fully understand so I just try to use them as much as possible in hopes of gaining some benefit while hopefully enhancing my cooking (which needs all the help it can get). :)

Yes, I know how you like to push the limit. The old poker adage works here, you want to know when to held’em and know when to fold’em…sometimes less is more. I’m glad you’re having these conversations with your onc.

Janine

January 20, 2018 at 5:39 pm  #1293842    

kempten

Thanks again Janine

My CT scan results where a mixed bag. Some nodules shrank , some stayed the same , and one
” might ” have grown ???????

I actually thought when I read the results, that they gave me another patients paper, but my name was on it.
I hate when the interpretation suggests new stuff that was not mentioned in the comparison CT.
Apparently my pulmonary artery showed compression and narrowing the last time that now has improved ?

There is no mention of this in the report from the previous CT
There are also a whole bunch of nodules listed as having been previously present that where not listed in the previous CT report .
Bronchiectasis was mentioned too as previously present . No word of it in the previous report.
Very frustrating .

I will make an appointment with a pulmonologist to help me interpret the two CT’s .

Thanks again

Kempten

January 21, 2018 at 7:53 am  #1293843    
JimC Forum Moderator
JimC Forum Moderator

Hi Kempten,

I can appreciate your frustration. We wait anxiously for scan results, but when they are as confusing as those you’ve received, it’s tough. Although I was the worst offender during Liz’s illness, looking at scan images and reports prior to meeting with her oncologist, it’s generally not the best course of action. In an effort to be comprehensive, radiologists at times report items which are questionable, and that’s often why some items will be described though they’ve never appeared in a report before. The current radiologist may see things when reviewing the previous scan that the prior radiologist didn’t find significant. When you get a chance to meet with your doctor, their prior experience may allow them to immediately dismiss these “findings” as irrelevant.

I hope your pulmonologist can clear up the confusion.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

January 21, 2018 at 10:06 am  #1293844    

kempten

Thank you Jim for your explanation .
It makes a lot of sense . And it makes me less upset.
After reading more on the Grace site, I also learned to be satisfied with my mixed results. Some shrinkage
and some stability now is more acceptable to me after learning the statistics .
Of course I was hoping for NED after 4 cycles Ha,ha. What is the percentage of that happening ? 2% ?

I’m counting my blessings
Kempten

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