Alimpta

[bam451]

I'm interested in anyone who is taking or has been on Alimpta. This is my mom's second line of defense. She just finished her sixth treatment. She was diagnosed in June 06 and has been trying to work as much as she can this entire time. She took off two months back in April and May trying to recover from chemo and radiation. She went back in the middle of June when she started Alimpta. It is really draining her now. She can barely keep her eyes open. If it wasn't for the fatigue, I think she would feel not too bad. Anybody have any solutions to the fatigue, anything that worked for them? How many treatments did you recieve while you were on this drug?? Anybody know what's next after this?? The scans are coming back good.. no progression, but just soo tired.

[dadstimeon]

I had Alimta also and yes out of all the chemos I had that one made me very fatigued. I had 6 but the important thing is that it worked for me, so was well worth it. I've been taking Concerta for my fatigue (my main complained since day one) and it really helps. Concerta is in the Ritalin family-- in adolescence it slows them down, in adults it gives them a boast. I also tried Ritalin, Magase and Provigel. Out of the four Concerta has worked the best for me. If you do go with Ritalin or Concerta they are a controlled substances and you need a script to get it filled, can't just call in in like other scripts. Hope this helps. Prayers for the best.

[Ry]

John had fatigue issues also and he asked for a break. He took a couple of weeks off the Alimta and was then able to go back and have the last infusion. I think John only had 6 treatments of Alimta so is she done with it now? Ask about Avastin.

[bam451]

She is on Avastin and Alimpta. Her doctor is useless if you ask me. I really don't like him at all. But at this stage of the game, who's going to take my mom on as a new patient. I asked him what the limit was, before it is doing more harm then good. When she was on her first line of treatment (Carbo, Taxol and Avastin) he said anything more than 10 would do more harm then good. SO that was her limit. He won't give me a limit on this line. He just says when it's no longer working or the side effects are out weighing the benift, they'd stop. It's just so frustrating. I hate life. I cannot even remember what life was like before all of this sometimes. I don't know what to do for her anymore. She is maintaing her own on this treatment which is good, but she's really having a hard time working. I don't know what she'll do if she has to quit work. I think that would be it. She's so driven and to sit home would be the end. I don't know. I told her about the Concerta but I'm not sure she wants to be on any more medication. I'm sure her onc would shoot that down anyway.

[dadstimeon]

Has mom talked to anyone who has been there done that? Would be more then glad to talk to her if I can be of any help. Just a thought.

[bam451]

Thanks so much for the offer. She's just so private and so emotional. I've tried to get her to talk to our Pastor, but she won't. She just wants me = ) I just sometimes don't know what to do. Thank you though, it means alot that you offered!!

[Leslie]

Bam451--

My dad is on Alimta/Avastin as well and after only one round of chemo, has had exactly the same level of fatigue that your mom is experiencing. We have been looking at everything possible as an explanation for the overwhelming fatigue--thyroid, pain meds, etc. But it looks like it may just be the chemo that is hitting him hard.

Yesterday, we went to the oncologist and he prescribed Provigel (although after reading Rich's post we may see if we can switch it to Concerta). So we will see if that helps at all.

We may also be looking at radiation to the rib cage--as my dad, like your mom, has a met there that is causing a lot of pain.

Wish I could be more helpful. I know how incredibly distressing it is to witness all of this without being able to have a surefire way to make it all better. I wish I had the answer for both of our parents!

I hope today is a better day for you and your mom.

Leslie

[Welthy]

Bam,

Sorry you are feeling down right now, but your Mom is one heckuva fighter!! Both my husband and Rich (Dadstimeon) have been though many, many chemotherapy cycles and lines of treatment.

Our doctor is willing to go the distance with my hubby as long as he wants to continue treatment, although it may be getting time to stop treatment. That is up to my husband. We are also in the Chicago area. Where is your Mom being treated? If you would like a second opinion, please contact me for our oncologist's information. There is always the University of Chicago in our backyard too.

Rich-- thanks for the info on this Concerta drug. I'll be asking about that on Monday!

Take care,

Welthy

[bam451]

My mom sees a doctor in the suburbs. When she was first diagnosed her onc told her point blank she wouldn't be here is five years. It was devastating. He gave us no hope, and it took a long time to finally convince my mom that she was worth fighting for no matter what this doctor said. It took so long to get her into treatment after she got diagnosed (a little over a month) that we didnt want to find somebody else. Although we are not thrilled with the doctor, we do like the staff at his facility. She did go to U of C and met with Dr. Hoffman. He was wonderful. He told my mom that her doctor, Dr. Azuma had prescribed the most state of the art treatment and that there was no reason to hike all the way to the city. Plus, it wasn't covered in her insurance plan. Azuma just doesn't have any people skills. My mom and I are very close and are very emotional people. She is my best friend in the entire world and when he treats her like a statistic, it makes me very angry.

I know she is doing a great job! I only hope that if I am ever faced with something this terrible that I can give it my all with the same dignity that she is.

I am going to have her call her regular doctor and ask about Concerta. Hopefully it will help. Is there a 3rd line? What happens after Alimpta? Nothing? That day scares me very much!!

[Leslie]

Bam--

You have many options remaining after Alimta. You can try Tarceva or Taxotere or can do a clinical trial...and I know that even more options exist after that. Your mom is a fighter...she will get through this.

In strength,

Leslie

[bam451]

God, it never ends. I left early today because she was sleeping so much to get some stuff done. I went home and my husband and I went out for dinner with his parents. She called and was surprised I had left with out saying good bye and I told her that she was sleeping and I didnt want to wake her. After dinner I called to check in and she said she felt horrible. Very jittery. Anybody experience this?? It's just always something. So hubby and I packed up the dog and came over. She was sleeping again by the time I got here. She didnt want me to come.. she hates making me drive over once I'm already home. But I cannot sit at home when I know she's not feeling good. I think I need a vacation from life.

[Welthy]

Bam,

Can I go on that vacation with you?

My husband is sleeping an awful lot and much of this is the after effect of five cycles of Alimta. This was a nasty regimen for him, although it's a breeze for others. He has been back down the pleural effusion road since the Alimta. Go figure! Each human body is a unique chemical factory.

We are just a smidge north of you and we also see an oncologist in his own private practice in the suburbs. We were all set to run to M.D. Anderson but the reality is, for people with late stage cancer, the treatment protocols are pretty well established. Once we realized that, it was a no brainer to stick with our oncologist who has a great reputation. Too bad bedside manners aren't taught in medical school. Our surgeon was a thoracic wonderkid, but a real bone-head in that respect.

Take care and read the profiles -- there are many other lines of treatment available.

Hope your Mom feels better soon.

Welthy

[ErinC1973]

I am really so very sorry to hear all that is going on in your life right now. It really just stinks. I've been through this with both parents...and it just STINKS.

My dad's oncologist had TERRIBLE bedside manner. He went for chemo and was treated like a number. He always felt terrible but never felt as though he could speak up about it, because everyone there made him feel as though they were annoyed to have him there. When my mom was diagnosed, I signed her out of the hospital and took her directly to Cancer Treatment Centers of America. In short, my mom used to cry because she wished that we had known about them when my dad was in treatment. She actually ENJOYED when it was time for her to check in for chemo; she said it was like a 3-day vacation! And not one single time did anyone EVER act like she should give up.

I have no advice about the fatigue...I just hope that your mom has better days coming.

My prayers are with you! If you ever need anything, we are very close to you.

[DrWest]

Bam451,

You've gotten lots of good advice here, and I just wanted to add that while Alimta and Avastin is an aggressive approach, your mother is experiencing more fatigue than I would usually expect with alimta. People are different, so it just may be that she's sensitive to fatigue from chemo, but I'd also wonder whether the avastin is increasing the side effects of the alimta. This is a regimen that appears to be pretty safe in the small studies that have looked at it, but it does appear that avastin can increase both the favorable and unfavorable effects of the chemo it's paired with. However, it's not clear that there's any benefit to continuing avastin after someone has progressed on it previously. I would be concerned that at this point it may be adding more adverse effects than benefits, but there's no way to really know.

There are certainly no standards for how long to treat someone in the second line setting, and we often do continue drugs like alimta and tarceva for a long time. However, that's because we sometimes see very long periods of no progression on these agents while they are also often quite well tolerated. If I have patients who are debilitated by the treatment, I strongly consider either stopping a treatment permanently, or more often just taking a break from treatment for a while.

As was mentioned above, there are other treatment options, with tarceva (an oral targeted therapy) and taxotere (another IV chemo) being the most established. Fatigue and other challenging side effects would be more common with taxotere.

For fatigue, other people here have also covered the main highlights. I often write prescriptions for ritalin 5-10 mg every 8AM and noon. Concerta is another preparation of the same drug as ritalin -- I believe it's longer acting. Provigil is also a similar choice. Decadron at a dose like 2 mg every morning is also an option, cheaper than the alternatives, but with a wide range of potential side effects.

Good luck.

-Dr. West

[bam451]

Thanks Doctor West for your inpute. She has been doing good on Alimpta and Avastin. She really is holding her own.. its just the fatigue. I should say though that through out her 14 month illness, she's worked almost full time the entire time. I think work is getting to be too much. Which may be contributing to the extremem fatigue.

I tried to ask her Doc about going back on Tarceva. I emailed you before about it. She was yanked off of it after four weeks because of change in one lymph node. I really didnt feel like he gave it a fair chance. And now I really feel like he doesnt like Tarceva. I had asked if we could try it again and he said why would we, there was progression. So I dont know. But thanks for your input. I appreciate being able to turn here when I feel like nothing is going right at home.

[sbf815]

My mom doesn't have the same cancer but she was on cisplatin,alimta for eight treatments and her cancer went away. After the eight treatments she went to maintenance, alimpta for another six treatments until it came back. My mom actually handled the alimpta well. She was tired but I just don't think there is much they can do for fatigue. They have come a long way but unfortunately it is one of the major side effects. My mom is now on doxil. She has pleural mesothelioma. She then went on Gemzar which she hated but that was every week where the alimta was 3 weeks off, one week on. The gemzar worked for about a month and a half and now she is on doxil which is the same as alimta. The doxil really makes her exhausted. I think the doxil has been the worst for her regarding fatigue. My mom worked up until her sixth treatment with alimta, cisplatin. I hope she feels better. Stephanie