Hello to all
I have been on Carbo/ Alimta ( 5 ) and now 3rd Alimta maintenance after Tagrisso progression . Though I'm still on Tagrisso . Onc did not want to discontinue .
Ct after 4th carbo/alimta showed a medium response . Stable some and shrinking others.
Ever since maintenance alimta I get fevers on day 4 and a general flue like syndrome . This did not happen with the combo .The fevers and flue like symptoms last 1 1/2 weeks and then go away.Temp as high as 102.1 orally
I put myself into the ER for a workup and all was negative . Blood culture neg, CT showed slight progression
in the lung , no evidence of pneumonitis or pneumonia . Blood tests showed nothing to scary low .
I was released from the hospital and took Tylenol to stay functional . Without pushing the fever down I would be bed ridden .
This same reaction happened again the next time , after day 4 of infusion lasting 1/1/2 weeks .
The fever increases in the evenings and caused severe night sweats , headaches , muscle aches ,
dry cough ( I have radiation induced bronchiectasis and the lung is progressing slightly ) dizziness, nausea
I can't put myself into the ER after every infusion and go through the whole workup .
The progression is not severe enough to quit doctor said , but my quality of life is poor because of the symptoms and he would accept that decision.
I read there is such a thing as a flue like syndrome with a variety of cancer treatments . I developed something similar after irradiating the main lung mass a year ago and nothing unusual was found then either
The article claims it's a poorly understood phenomenon .
I have low grade autoimmune disease and am wondering if this could explain the reaction ?
Kempten
Reply # - April 12, 2018, 07:28 AM
Hi kempten,
Hi kempten,
I'm sorry to hear that you're experiencing these symptoms. Section 6 of the Alimta prescribing information states that 1% to 5% of non-small cell lung cancer patients experience fever that is not associated with neutropenia.
As with many side effects of treatment, the only way to be certain your symptoms are caused by the Alimta infusion would be to take a treatment break. Certainly the timing of the onset of symptoms points in that direction. If you take a break and the symptoms return after resuming Alimta, then it might be time to decide whether the benefits of Alimta are worth the side effects. The two goals of anti-cancer treatment are improvement in length and quality of life, and since other options are available we would hope you wouldn't need to sacrifice one of those goals to attain the other.
Good luck.
JimC
Forum moderator
Reply # - April 12, 2018, 09:50 AM
thank you so much Jim
thank you so much Jim
I was under the impression that I had pretty much exhausted all treatment options with an ok chance of working .
I'm not aware of other compounds that would have a good chance of working at this point .
That's why I was holding on to to the Alimta since it also penetrates the BBB
I will have an appointment at Mass General soon . I looked at their clinical trials . Nothing struck me as very exciting and many of the trials I would not qualify for .
I was going to ask if microwave ablation might be possible in the lung . It is gentler on the surrounding tissue than radiation and can be repeated . Maybe I can hold myself over for a few months with some palliative
treatment to ease breathing and reduce cough ???
I would be very reluctant to try another chemo . My local onc said that each consecutive chemo will be fess effective than the previous one due to increased aggressiveness of the tumor
We went from Tarceva , Srt in the brain , Tagrisso , irradiating the lung tumor , Srt in the brain to
carbo /alimta . Diagnosed November 2014. It's 3 years and 5 months
I'll let you know what the people at Mass General have to say.
Kempten
Reply # - April 12, 2018, 10:40 AM
Hi Kempten,
Hi Kempten,
I'm sorry to hear about the fevers, if it's not one thing it's another, no progression but the side effects suck. I get what your saying about another chemo. Your right that moving from one line to the next usually ends in less stability but that's changing treatments because of progression...you're not progressing so that phenomenon doesn't really apply. Aside from the good possibility that alimta is working in the brain you could very well have as good efficacy with another chemo like gemzar and maybe not have the problems with fever. With a close eye on the brain you can catch new progression and counter with srb.
Edited to add: People have moved on and off of alimta for various reasons but have been able to get good efficacy after coming back.
Another thing to think about is a break would allow your system to rest and repair. A break could be for one extra week off or a month or wait until symptoms appear... Many oncologists think that close scrutiny through clinical symptoms and scanning can catch progression early enough to jump in and attack the cancer at the first signs of progression. Your oncologists will have a good idea of the character of your cancer and best judge how you're likely to do with a break.
I hope your appointment at Mass Gen offers good options moving forward.
All best,
Janine
Reply # - April 12, 2018, 11:03 AM
Thank's Janine
Thank's Janine
I am progressing minimally though . CT after 4 combo treatments showed shrinkage and stable .
A CT a few weeks later showed minimal but clear progression . ( this ct was done to rule out pneumonia or pneumonitis ) . Dr explained that the progression is there but would not be enough to throw me off a trial if I was in one .
So that's why I'm still on Alimta . But we anticipate continued progression , we just don't know how fast it will be .
An Alimta vacation sounds lovely . I want to visit my mother in Germany if my condition allows .
Would not be able to go the way I feel right now .
Wondering if a case of the shingles a few months ago and a short break from chemo ( 2 weeks ) and antiviral drugs could have messed with the effectiveness ??
Kempten
Reply # - April 13, 2018, 10:11 AM
Oh Kempten I think a visit
Oh Kempten I think a visit with your mother sounds...(tone it down Janine) great. How to make that happen is an important conversation to have with your oncologist. When treating at stage IV nsclc it's important for the oncologist to know what you want out of life so she/he can help make that happen. It really is an essential component in creating options that fit each patient, it's part of the "art of oncology". As you know better than I at some point there are only management options that give a low likelihood of efficacy or likelihood of low efficacy. Oddly enough this very conundrum can open more options, like a break to visit Germany may give your system the time it needs to heal which in turn your body to be able to withstand more treatment.
I'm going to look for a post but faculty here have stated that a week or 2 break from treatment isn't likely to make a difference in survival and can add to it by allowing a person to heal making further treatment possible.
There aren't any contraindications other a hypersensitivity to itself but anything can happen in an individual's case and the only drug interaction caution refers to timing of taking ibuprofen. https://www.alimta.com/hcp/important-safety-information-for-healthcare-…
I hope I haven't overstepped with the mom thing.
All best,
Janine
Reply # - April 13, 2018, 01:45 PM
Hello Janine
Hello Janine
Today I went for blood work and learned that my Neutrophils where 160 .
Blood cultures will be taken tomorrow and I'm supposed to take prophylactic antibiotics .
I will probably ask to discontinue the chemo and hope I will recover somewhat without very rapid cancer spread .
Hoping to visit mom some time in early summer .
Thanks so much for your support . Feeling comfortable with the decision to stop treatment even if it might be only for a while takes some time and deliberation . I think I have reached the point where I can make peace with that decision .
As always your support here is so comforting for us patients .
I'll be sleeping better tonight
Kempten
Reply # - April 16, 2018, 07:40 AM
Probably too late but when I
Probably too late but when I was on carbo/alimta, I also would get the flu like symptoms. I took OTC Benadryl and it totally helped. With some people, they give IV Benadryl. Good luck!
Take care, Judy
Reply # - April 16, 2018, 09:40 AM
thank you Judy
thank you Judy
I will most likely ditch the Alimta . The cancer is slightly growing already and the stuff is making me just too sick.
Kempten
Reply # - April 16, 2018, 02:46 PM
Glad to hear of the "slow" in
Glad to hear of the "slow" in the progression. I suppose the oncs think that is tagrisso?
Reply # - April 17, 2018, 08:24 AM
Hello Janine
Hello Janine
I think we don't know which if any cancer cells the Tagrisso is still actively keeping in check after 2 years
I would hope that there is still a cell population present that stays somewhat inhibited by this TKI.
There was also the controversy weather it might negatively interfere with the effectiveness of the chemo .
My doctor at Mass General strongly encouraged me to stay on it . Your faculty would have discontinued the Tagrisso .
If the chemo had been more successful, had we discontinued the Tagrisso, we'll never know.
How long will the insurance be willing to pay for the Tagrisso ?
How will my cancer react once the Tagrisso brakes are taken off ?
Questions , questions and no answers .
Kempten