Anybody have any experience with Alimta? I had radiation and low-dose Taxotere with carboplatin, and after that there was a recurrence in a lymph node in my neck. So I'll be starting full dose Alimta very soon. Would be interested to know others' experiences with this. Thanks
Hi - I just started Alimta on Thursday - so far so good. My last chemo with two drugs and radiation was Oct. 2004, a month of radiation in 2005 and then Tarceva last June 2007 (didn't work). Now have mets to ribs so am hoping for some results - I will take 6 rounds of Alimta every three weeks for about 6 months. They do x-ray and blood tests before each cycle. Also do they have you take B-12 shots and Folic acid with this chemo? That is one of my requirements. Good luck and keep in touch. I have heard some good results with the drugs so here's hoping!
Sylvia
thanks Sylvia. Yes I already got a B12 shot (every nine weeks) and am taking extra folic acid every day--has to start one week before onset of Alimta. What about side effects? skin rash? mouth sores? hair loss? any of that or anything else? I have to take 8 mg of Decadron day before, day of, and day after. What about you?
Sounds like we are on the same page. I was told unlike last chemo that there would probably be no hair loss with this treatment (a plus!) maybe a bit thinning of hair. Skin rash, mouth sores possible but I didn't get any from first chemo treatment - some do. I just finished my 4 mg. of dexamethasone day before chemo, day of chemo and next day - supposed to prevent skin rash and nausea - probably the same type you will be taking. Feel free to contact me this week and I will let you know how I am doing. Take care and stay positive!
Sylvia
thank you. I hope you do really well with this. Just one other question. Any blood count problems? I had minor issues with blood count with low dose Taxotere and carboplatin, but nothing really serious.
Yes we all have to stay positive. Very important.
Hi - With my first chemo I always had to have my chemo session one week later than appt. date as my white blood count was not high enough. Was depressed a bit about that at the time but worked out okay in the end. Just having my breakfast now - cottage cheese and flax oil with blueberries and with a glass of grape juice and so far so good. This is my standard breakfast for several months now - hah! Oh well, going out for lunch with an old friend - soup and a roll for me!
Sylvia
Good for you. I don't know if this may be helpful to you, but Michael Murray in his book on cancer and nutrition, strongly recommends whey protein for people on anti-metabolite therapies. While Alimta had not even been approved at the time he published his book, there were other anti-metabolites like methotrexate and others. So I try to do a whey protein powder shake twice a day. You can make it tasty by mixing it with oat milk and frozen fruit (especially cherries-yum).
Thanks for the tip on the Whey protein powder - I will try. I do drink Boost drinks when I am not too hungry and they go down real good. I have read tons of books since the biginning of this journey and know that nutrition and exercise are of the utmost importance during it all.
Yeah, I have a problem with exercise because one of the complications has been blood clots in my legs. So I'm on coumadin every day. The leg situation is off and on. A week and a half ago they were good. Now they hurt again. Makes walking tough and especially standing in one place. But I am a fanatic about diet and supplements. My nutritionist said to get some animal protein every day--chicken, cheese, eggs, yogurt, etc. (Fish does not count). And he said to get red meat once a week. Protein is crucial for cancer. The hospital nutritionist said 100 grams a day of protein. I try to aim for that, but don't always make it--usually get in 75-80.
I was on Alimta for 19 months & was generally stable the whole time. Side effects were very minor(eye irritation,shortness of breath) but it was no problem. No nausea, hair loss or blood count problems.
I know that others had difficulty w/blood chem but I never did.
Phil C
OK thanks Phil. So what is your status now? It seems like Alimta requires pretty long-term use. My oncologist told me he had one patient on it for two years and another for six months.
Well I shifted to Taxotere after experiencing progression in Feb.
I would have happily stayed on Alimta until the fat lady sang. Taxotere has caused some fluid retention problems that have really restricted my breathing. We are still fishing for a solution(lasix, permeds etc.). Meantime I have gone on supplemental.
Oxygen.
Phil c
I hope you will get through this really well. Very best of luck
Lawrence
Hi,
my Dad had an Alimpta treatment a couple of weeks ago. His blood counts are low - he needed a transfusion Friday but he is also getting radiation to shrink the big tumor because it is obstructing his lower and middle lobes on the right.
Not sure if his counts got so low from the alimpta or the radiation.
Best wishes to you, stay strong and positive.
Eileen
Hi, I have had 6 rounds of Alimta, with scans after each two. No loss of hair, but slight thinning. No bloodcount issues. I do get nauseaus if I don't take the anti-nauseaus meds before it hits. The 1st 2 scans came out good. No great reduction, but no increase either, so I was happy with that. I am due for a pet scan next week before I have another treatment, and quite honestly, my condition has gotten notably worse since my last treatment, and I am now on oxygen several times a day. I have trouble holding a conversation without causing a breathing crisis, let alone get anything done or go about my usual activities. My cough is back as worse as the time I was diagnosed. So I am not looking forward to the next results. But there are several people I have seen on this site who had good results for a long period of time, so again, a reminder, that each individual's cancer, even though most of us discuss nsmlc stage IV, travels it's own path. It is definitely worth giving a try. Quite mild and can be taken for a reasonably long time if it is effective. Good luck,
Gweena
Thanks Gweena. I am 3B, but because there has been a recurrence since low dose chemo and radiation I don't know if that changed my stage. You're right, everybody's different. I hope things go well for you.
Lawrence
I just had my 2nd Alimta infusion Thursday morning. I took Vit B-12 shot and began B-12 and folic acid one week before my first infusion, which took place three weeks ago.
My side effects included mouth sores and two respiratory episodes: 1. 1-1/2 weeks after first infusion, severe, wracking cough with fever (the cough so bad that I experienced my fourth sacral stress fracture); and 2. Dx with pneumonia last Sunday, following which 1 hr. antibiotic IV and 9 days oral antibiotic.
Despite this, my chest x-ray and lab results came in fine so oncologist approved 2nd treatment. He did tell me, however, that if I have a third respiratory episode that he will halt further Alimta treatments on basis that it is toxic to my lungs (ironically, a not-uncommon side effect of Alimta) regardless of its possible efficacy (it won't do me any good to have shrinking or stable tumors if the respiratory issues kill me off instead).
Carole
NSCLC Poorly differentiated squamous cell carcinoma Dx 01/07
Well that is peculiar. My understanding is that Alimta has as its indication NON-squamous cell NSCLC, not squamous. In fact, I have recurrence in at least one lymph node in my neck and I don't understand how Alimta will address that if its indication is non-squamous cell NSCLC. Is the disease in the neck lymph node in that category? I don't see how. I forgot to ask my oncologist about this, but will do it Monday. Just had first infusion this past week. So far no major side effects. (I also got a B-12 shot and take folic acid every day).
The odds of Alimta slowing or stopping progression are significantly higher for non-squamous cell carcinoma than for squamous cell. Alimta nevertheless remains one of the few 2nd line defenses open to squamous cell (I can't go on either Avastin or Nexavar, for example, due to higher odds of pulmonary embolisms).
In other words, I'm on Alimta on the "off chance" that it may work despite the fact that I'm squamous. If it doesn't work (or when it stops working), I'm down to two options: Erbitux and Taxotere, neither of which have good odds either, with both of which having worse side effects than Alimta (which had worse side effects than Tarceva, which also had worse odds for squamous and was unsuccessful in my case).
In other words, my oncologist and I are working our way through the squamous cell "short list," selecting treatments based on quality of life (the less the side effects, the greater the quality of life).
Note: Although adenocarcinoma responds to more therapies than squamous cell, the latter tends to be slower growing (slower doubling rate) and slower to metastasize outside the chest cavity--unless the biopsy shows the tumor to be poorly differentiated, which is the situation in my case. :-(
Carole
NSCLC IIIB Poorly differentiated squamous cell carcinoma dx 01/07
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