ALIMTA club- Welcome part 2

Dear friends,

It is clear that we are seeing more and more people on Alimta as second line treatment and also as maintenance than what we did a year ago. I am so happy to read about the good results.
I started the Alimta club so there would be a place to easily find others on Alimta, a place to find information and get advice on how to combat side effects and so on. The first thread is getting close to the three month mark when it will be closed. So here is part 2. To make it easier for you to find part one I have attached a link, I think there is some great information there.

Link to Alimta club- Welcome.

http://www.inspire.com/groups/lung-cancer-survivors/discussion/alimta-club- welcome/

I hope this will be helpful.

Have a wonderful day everyone!

Annika

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206 replies. Join the discussion

Dear hope4everyone,
Welcome!
I hope your husband will tolerate this trx well. You asked about hairloss, most people do not lose their hair from Alimta but it is listed as a possible side effect. I lost my hair while on Cisplatin/Etoposide.
It grew back and I am not shedding any hair now!!

Please keep us posted.
Wishing you and hubby all the best.

Annika

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Sandi, thanks for your response to my posting.

An unusual situation occurred to me on Thursday when I was experiencing muscle and joint pain simply walking up stairs or getting in or out a chair. It even hurt to move my arms. Coincidentally, I started taking pre treatment preps (dexamethasone) that same day which was the day before my Alimta/Avastin/Zometa infusion on Friday. Within 6 hours after taking the Dexamethasone steroid on Thursday, all of my muscle, bone and joint discomfort completely disappeared. On Friday when I met with my Oncologist I spoke to him about this situation and he said this was normal and that the Dexamethasone will address this type of side effect caused by Chemo but unfortunately it would not be wise to take this steroid on a daily basis - too bad. My Onc also mentioned that there will probably be an accumulation of the Chemo - particularly the Alimta and that I will continue to experience this type of discomfort. Apparently I will have to start taking some type of pain killer and heavy up on Vitamin B-6 to help alleviate this problem. However, small price to pay for the overall benefits of my treatment.

As an aside, my PET and CT scans were good last week. Primary tumor in upper right lung (now 2.5 x 2.7 cm) has decreased 40% during the past 6 months with no other negative activity. I've now completed my 19th Alimta and Avastin treatment. I take Zometa for a left hip lesion every 3 months.

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urinary track infection. I have been fighting a bladder infection on chemo, but I haven't read anywhere that its caused from chemo

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Dear gjb38,
How wonderful! You have a 40% reduction!
That is great news!
Let's take some dexametason so we can dance!

I was reading your post on the bone and joint pain. When I was on Carb/Alimta back in fall 2010 it was the worst for me. I had signed up for a lung cancer walk, I was even going to have a team. Then I had my treatment and was knocked out of my shoes. I could not walk. It was terrible. Just like you describe the aches and pains are helped by the steroids. So my onc tried to help me fulfill my commitment, we tweaked the steroids and that is when "Grandmaroid" came about. I do not do well on steroids I become a madwoman.
It provided some entertainment for the good people here on Inspire but it scared my family and myself. I was able to fulfill my commitment and we did raise some money. Now I don't take as much steroids, my family and myself are prepared and I think we are coping better.

Looking back on these last trx it seems the pains have been less bothersome on those two trx occasions when I did get my B12 shot. The first and the the time when we had spaced out the trx to almost 4 weeks. So the Q is if it is the shot or the added time to recuperate.
The same goes for the fatigue level.
It is very interesting to see how others are dealing with the same issues and how well it works.

Wishing you all the best and again congrats on the great scan results!
Annika

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Thanks Annika,
The entire Chemo treatment process seems to be an experience that is individually unique to each of us. After reading about the many, many people who are responding well to Alimta but experiencing different side effects, one simply has to be grateful, accept the situation and go forward.

Fatigue a few days following treatment seems to be the one side effect that is almost universal among Alimta users. As an example, I had treatment this past Friday and have not experienced any side effects...as of yet. But, I usually experience significant fatigue within a few days following treatment that generally lasts for about 4 days. In my case, the fatigue gradually dissipates and I get back to normal for a couple of weeks. (I'm on a 28 day treatment cycle) Hopefully the muscle and joint discomfort won't be too bad during this treatment period. Since taking Dexamethasone every day is not a good thing to do, I guess that I will load up on Aleve.

Best to all,

Gary

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Annika,
I just talked to the dr. about feeling better after the B12 when I saw him before treatment on the 11th. He said why not, if it makes you feel better, and he had the nurse give me one that day as well, so it was 3 weeks after I had last gotten one. So tomorrow will be the test--if I feel great tomorrow I will know that's what it is, hopefully. Though there are a lot of other variables, sometimes it is hard to stay on an exact schedule and keep everything the same, I'm sure you know what I mean.

I also tried taking Claritin D after reading about it here, it has helped with the sinus issues, drippy nose and cough from drainage.

All the best.

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Dear sistersue2,
I sure hope you will feel great tomorrow! I am most curious to hear how it works out. I am glad you found that the ClaritinD helps you with the sinus issues. It sure helped me.
Please keep us posted.
Annika

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Annika:

Starting last evening, I noticed a difference in my energy level. I felt motivated and not so exhausted. I really think the B12 helps. It doesn't take away all the digestive issue side effects, but I am sure it lifted the fatigue. I have had a very active day today and wasn't dragging like I usually do on the 6th day.

I will definitely report this to the dr. and hope to get the B12 every treatment day.

Life is good.

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Sistersue
Yes Life is good!!
I am so happy you feel better, if this is the ticket, well that is great!
I hope it holds true.
Have fun!(don't waste your energy on cleaning)

Annika
Annika

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Wasting energy on cleaning -- funny you should mention that. Anita had her second Carbo/Alimta infusion last Friday and on Saturday night, at midnight, was vacuuming carpets. The steroid high. Monday she was a bit tired, but nothing that kept her down. Tuesday, back to normal. Same script as the first round.

RBC doing good, but WBC didn't bounce back by 3rd week following the first infusion. Went from 2.8 at wk 2 to 2.4 at wk 3 (just before 2nd infusion) -- not low enough to prevent the infusion, but it was a bit disconcerting to see no bounce-back. We'll see what this week's numbers bring.

And the WBC is confounding the work situation. She's ready to go back, but her job is social worker in a skilled nursing facility. The primary concern is risk of infection. Unlike the other social workers at this facility, who pretty much do the majority of paper-pushing, she actually visits with the residents to do assessments. Now that the Onc has started discussing Alimta maintenance as a possibility, continuing low WBC numbers could be a problem.

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Dear winjr,
I congratulate you to an energetic wife and a clean house!
I read your reply and went back to refresh my memory on Anita's history.
I have some thoughts on her options. I sent you a friend request.

Sincerely,
Annika

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I just started treatment with Alimta/Carboplatin. Started, but don't know if I can continue with it. I got it on May 16th, a Monday. Two days later, on Wednesday, I woke up very early (4:30-5:00am) with significant pain in my right side -- the side my lung cancer is on and the arm I got the IV chemo in. The pain got worse and it seemed like my entire right side of my ribcage, my right shoulder, and entire right arm including my hand were affected. Most of it just had a dull ache by then I developed a spot on my side (right) a ways under my armpit, and another on my back near the spine which started getting more severe stabbing pains. The pain worsened all the next week until finally they started giving me oxycodone. The pain still has not gone away, I went back to the oncologist last Friday and they put me on a med for nerve pain, which so far hasn't seemed to do a thing except make me sleepy. This seems like bone pain to me, with maybe some muscle pain.
I read here that people were saying the pain was worse from the 4th day to the 7th day, but then apparently went away? Does it go away? When? I am in such total misery and I'm afraid to take Alimta again for fear it will make the pain worse. Does anyone else have this bad an experience with Alimta?

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Dear HarmonS,
I am sorry about your pain.
did you have any other treatment prior to this? Radiation? Rarely can alimta cause radiation recall, but it has been reported. did the infusion go well into the vein, You have no port? Did the vein pop and the chemo go out in the tissue? What are you getting for premeds? sorry you probably wrote that. I got exited when I saw in your bio that you are form Oshkosh. I am in Brookfield.
I need to think about your symptoms. I hope someone else will drop by with a good answer for you.
I forgot my manners;
Welcome to Inspire and our Alimta club. I am sorry you had reason to find us but glad you did.
There are a lot of nice supportive people here, and many with great experience and knowledge.

Wishing you all the best.
annika

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My Dad is on maintenance Alimta. Today he was hospitalized after he suddenly developed severe leg stiffness and neuropathy in both legs, and collapsed because he lost all strength in both legs. They will be running tests in the morning, and they will consult a Neurologist. Recent CT scans were good. The only thingdifferent was a Venofer infusion last week, because he has become anemic. I am so worried.

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I am so sorry this must be so scary for your dad and for you. It is a good thing they got on it right away. It is difficult to speculate as to what really has a happened. A neurologist will be helpful in this. Unfortunately symptoms can come on very quickly.

I wish you and your father all the best and I hope you will keep us posted.
Annika

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Thank you! He had been doing well with Alimta, but now it seems like his body just can't tolerate it anymore. Will probably take a break. he is just so afraid that doing so will give the cancer an opportunity to come back.

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I understand his fear. They need to deal with this first before they can continue with treatments. Hopefully it will not be a longer delay. He is in the right place where they can deal with it.
It is rare that Alimta causes motor neuropathies, but it can happen. Any nerves can be involved.

Please know that we are here for you.
If you make a separate post, in for example "what me worry" more people will see what is going on and maybe someone will have some answers for you. In the Alimta thread as a reply it is not seen by all.
Do you know what I mean?

Sincerely

Annika

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I never had any radiation. I had a couple of different chemos before, one was Avastin, can't remember what else. And I've been on Tarceva (oral daily) for the last year or more. I had been fairly stable but my last CT showed a lot of growth, so they switched me to Alimta/Carboplatin. I got B12 and folic acid before, but no steroids. I just can't take steroids, they make me crazy. I'm on gabbapentin and maybe that's working -- yesterday my pain overall was much less.
And yes, I got the Alimta in my vein in my right arm, no port, but it went in okay.
But I'm really worried about taking Alimta again. Does it cause the pain each time or does that get better with repeated doses. Or worse? I don't want to go through another two weeks of hell like I did this time.

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Dear harmon,
here is GrandmaRoid again,
I earned the name due to the fact thst i will soon be a grandma nd that I go cracy on steroids. We have to tweak them. I misunderstood your previous post. I red you "spots" as spots, a spot on your skin.
You referred to a painful area.
Sorry. Well, I have had pains form my chemos on my tumor site (rll) and also what I have called the Alimta squeeze, chest pains. My mediastinum had cancerous l-nodes.
However at this time there is no cancer but I still get the squeeze from time to time. Not quite as bad as it used to be, same w leg pains.It was way worse when I had Alimta w Carboplatin. Now I take the ClaritinD and it helps w my sinus/eye issues from the Alimta. I have a nerve that was damaged by radiation and I know nerve pain is tough.

Maybe it would be worth trying the ClaritinD, unless you have high bp? You can ask your dr. if it would be o.k. Maker sure you take it the day of chemo or even the day before (I have done both) then i continue for a couple of days, it gives me a dry mouth that I use Biotene toothpaste and mouthwash/chewing-gum for. So then I back off and if it starts up I take another for a day or two.

It is all a matter of finding what works for you. I hope your pain subsides soon.
Please keep us posted.

Annika

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Hi Everyone,

Thanks for all of the info you've shared. My husband was diagnosed with 3B in 2008. Did 6 alimta/cis and 30+ rads. Was NED for 2 yrs. Had recurrence in neck nodes in Feb 2011. Just finished 4 alimta/carbo with very good results. We're going after it with 30 rads to finish it off and he'll be on maintenance alimta.

His main complaints are constipation (right after treatment), fatigue, and foot neuropathy. Annika, I just sent him off to get your vitamin supplements for this. Was also interested in acupuncture--have made an appointment to discuss tomorrow. The fatigue frustrates him the most. I'll bring up the B-12 every treatment and moving from 21 to 28 days with our onc. First we'll have to see if things improve on alimta alone. And then there's the rad issue too. Guess we won't get a good read on the alimta until that's finished.

Please keep sharing your tricks, tips, and workarounds. We really appreciate it. All best.

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