Jump to content

My Alimta Log - FINAL UPDATE 03/31/09


recce101

Recommended Posts

I started Alimta yesterday (February 3) and decided to post a log of the side effects I experience with this third-line treatment. I'm starting from a relatively clean slate in a couple of respects. According to my latest scan, there's still no evidence of mets anywhere outside the right chest, the original tumor is probably scar tissue, and the pleural effusion has not shown any evidence of returning. The reason for stopping Tarceva and moving to Alimta is because a number of new nodules which showed up in the July and October scans have continued to grow and are presumably resistant to Tarceva. So far these new nodules have not caused any obvious symptoms. Also, the side effects from my previous treatments have resolved to a remarkable degree, even the skin issues and stomach distress from the Tarceva that I'd been on for 16 months but stopped just 8 days ago. Starting this past weekend I've felt better and more "normal" than at any time the past 3 years, my other chronic conditions are behaving, and while I have limited endurance for hard physical work, I feel quite capable in most ways. So whatever happens in the days and weeks to follow can very likely be chalked up to the Alimta. My updates may become less frequent as time goes on, but I'll make them daily for a while.

01/27/09: Stopped Tarceva, received B12 injection and prescription for Folic Acid (take daily), Decadron (take the day before, day of, and day after each infusion), and Compazine (take as needed).

02/03/09 [A1]: WBC was elevated, probably because of the oral Decadron, but no evidence of infection, so cleared to begin. Opted out of the automatic Neulasta injection that would have been tomorrow, but will come in for blood test next week. Premeds included IV Decadron, Aloxi, and Tagamet, followed by the 10-minute Alimta infusion. Total time hooked up less than 1 hour. No discomfort, had a good lunch, was active in the afternoon, good dinner. The only thing out of the ordinary was several episodes of hiccups, rare for me. My standard anti-constipation routine will be 2 OTC Docusate Sodium capsules before bedtime and prunes in the morning.

02/04/09 [A1+1]: Good sleep last night. As of early afternoon still feeling good, still having hiccups, plan to go shopping shortly. Will have last Decadron tablet before dinner, so anticipating somewhat of a crash tomorrow.

02/05/09 [A1+2]: A little tired, not bad, won't need a nap today. No more hiccups, but have developed a slightly sore throat and tongue. Gargling with baking soda and warm water helped. Hope this doesn't interfere with the barbecue ribs I put in the slow cooker this morning! :x Took a nice walk in the late afternoon, and the ribs were good.

02/06/09 [A1+3]: Stool softener and prunes weren't cutting it, so also took milk of magnesia last night before bed, and the logjam broke this morning. Will discuss this with the NP or onc when I get my blood test next week. Throat and tongue have improved, and I actually feel pretty good as of 7am. Faded about noon, took an afternoon nap, better by dinner time. Some soreness in the legs, abdomen, and rib cage. It takes more effort to breathe deeply, and there's some discomfort when the lungs are fully expanded (not enough to be called "pain").

02/07/09 [A1+4]: Good night's sleep, still a little tired, but feeling more normal in general. Throat okay, no problems with taste or digestion. Took a walk in the afternoon. Had pizza for dinner and no heartburn! Definitely easier than Taxol so far...

02/08/09 [A1+5]: Legs sort of achy when I woke up, but okay after some ibuprofen (glad my stomach is in good enough shape for me to take it). Wife and I drove to Honolulu's Chinatown to buy moon cakes and Year of the Ox items for some Chinese friends. Was nice to get out, but I don't think I'll need any more walking today.

02/09/09 [A1+6]: No aches this morning, but a RASH — itchy bumps on the face and upper trunk. Maybe it's partly because I was out in the sun so long yesterday. I know Alimta rash is a side effect that the Decadron is supposed to control, and I've been off Decadron 4 or 5 days now. I believe Dr. West gives Benadryl in this situation (don't know if oral or ointment) and for severe cases may add steroids back in during this part of the cycle. I'll be going to my clinic tomorrow and will ask. Meanwhile, the Vaseline Intensive Rescue I was using for Tarceva seems to help. It was cloudy this afternoon, so I went on my standard walk.

02/10/09 [A1+7]: WBC count was fine. NP suggested I add Senokot (or equivalent) to my anti-constipation routine. For itchy rash, I'll try a standard dosage of OTC oral Benadryl and treat affected areas with1% Hydrocortisone Cream. Itch better by mid-afternoon, took my usual walk.

02/11/09 [A1+8]: Rash is still quite apparent on the upper body, both front and back, but the itch is much less bothersome and I slept okay last night. Taste and tolerance for my favorite foods seem unaffected by the Alimta, a real blessing! :)

02/12/09 [A1+9]: The itching has stopped, the rash on the chest is practically gone, and the back looks better. I'll continue with the Benadryl and Hydrocortisone a while longer. There's still some discomfort when breathing deeply, and the spirometer indicates my lung volume has decreased, but I haven't experienced anything I'd call shortness of breath. Overall, I think it will be a good day.

02/13/09 [A1+10]: Rash and itching are no longer an issue, and nothing new has happened, so from here on I'll post updates only when I visit the clinic or there's something else to report. Eating is once again a pleasure and no longer a chore! :)

02/17/09 [A1+14]: B12 injection today. Feeling good, with no symptoms I can attribute to the Alimta.

02/24/09 [A2]: Another B12 shot, followed by the second Alimta infusion. Port was accepting the IV solutions rather slowly, so chemo nurse will attempt to unclog it during my followup visit next week.

02/25/09 [A2+1]: Feeling good, minimal hiccups this time, last Decadron tablet will be this afternoon.

02/26/09 [A2+2]: Doing better than this time last cycle, and even that wasn't bad. Tongue just slightly tender, throat okay. Ramped up my anticonstipation measures with good success so far. I've also resumed my full-on Tarceva-style body lube routine, hoping that will minimize the itchy rash when and if it starts this cycle. Will definitely go for a walk today.

02/27/09 [A2+3]: Faded early last night, went to bed at 9:30, and slept for almost 9 hours interrupted by only two quick bathroom trips — an exceptionally good night's sleep for me. Throat is okay, no muscle soreness or rash so far, my favorite foods are all tolerable, and I can even taste them! Gonna help the wife with some replanting this afternoon.

02/28/09 [A2+4]: A little tired and achy today, but it was not from the replanting (the weather didn't permit much of that). Felt better after a nap.

03/01/09 [A2+5]: Feeling quite normal today, and no rash in sight!

03/03/09 [A2+7]: Went to the clinic for a blood test (fine) and to have the chemo nurse attempt to unclog the double-chamber port. No success on either side — solution will go in under pressure, but not via gravity drip. Will have a dye study done at the nearby imaging center tomorrow morning.

03/04/09 [A2+8]: Dye study indicates catheter is no longer positioned satisfactorily in vein, so port will be removed. Chemo nurse sees no problem doing infusions via hand or arm, at least for a while.

03/07/09 [A2+11]: The past couple of days the foot/ankle/calf swelling and stasis dermatitis which I've had for at least 10 years has gotten worse. In late 2006, while I was on Taxol/Carbo, there was a similar flare-up which eventually settled down to its usual mild state after I finished Taxol/Carbo and went on maintenance Avastin in early 2007, and it stayed mild throughout my Tarceva treatment. Apparently the Alimta is causing reduced circulation in the lower legs as the Taxol/Carbo did, and this adds to the already deficient circulation there which caused the problem in the first place. So far my skin lube routine has prevented the cracking and scaling that occurred the other time, and I'm already on a diuretic, so about all I can do is keep my legs elevated above the heart as much as possible — not easy when I'm feeling fine otherwise and want to stay active! :x

03/09/09 [A2+13]: Yesterday my left calf became very warm, touchy, and noticeably more swollen than the right calf. These symptoms seemed similar to some blood clot descriptions I'd heard, so this morning I called my oncology clinic and spoke to the nurse practitioner. She told me to go immediately to the imaging center near their building for a Doppler ultrasound, then come to the clinic. The imaging report arrived at the clinic shortly after I did, and it was negative for clots/DVT. I came home with a diagnosis of cellulitis, a prescription for oral antibiotics, and instructions (out of an abundance of caution) to call 911 in the event of chest pain or shortness of breath. The entire episode was handled with remarkable speed and urgency.

03/16/09 [A2+ 20]: Legs are better. Soreness in left calf is essentially gone, though it's still swollen more than the right side. Frequent lube with Vaseline Intensive Rescue has helped reduce the "tight skin" discomfort in both legs when changing positions. Started Decadron today in preparation for next infusion tomorrow. Feeling good overall.

03/17/09 [A3]: Received IV in hand today since port has not yet been replaced — no problem finding good vein. Will consult with surgeon later this week about replacing the blocked port with a single-lumen power port which can be used for CT dye injections (in addition to chemo infusions and blood draws).

03/18/09 [A3+1]: Planning an active day. One more Decadron tablet to go, and haven't felt anything from yesterday's infusion so far.

03/21/09 [A3+4]: Swelling in left calf is still minimal, but left knee is now puffed up and sore. I wonder how far this is going to go??!!

03/24/09 [A3+7]: Left knee is still plenty swollen, so got a short-notice appointment to see my onc today. He's still concerned about the possibility of a blood clot, so sent me to imaging to repeat the Doppler ultrasound. Negative again. Instead of more drugs he wants me to wear my detested support stockings, elevate legs whenever possible, and cut back on salt. I think the latter might be a big factor since my taste and stomach are now doing so well that I've been making up for lost time on pizza, chili, miso soup, and "you name it" for high salt content. Since I don't have any blood pressure problems I haven't been holding back, and maybe the salt has caught up with me. Another bummers! :x

03/31/09 [A3+14]: Left knee is somewhat improved, but onc is referring me to a vascular specialist for evaluation. CT scan shows some continued progression in right lung, and several new nodules are starting to appear in left lung, so Cisplatin will be added to Alimta starting with next week's infusion. Since my "Alimta only" experience is now ending, this log will stop with today's entry. Conclusions: Aside from the swelling, I found single-agent Alimta to be very tolerable, even more so than Avastin alone. Minor fatigue a few days after each infusion, no nausea, no problems with eating, rash only once, a subtle feeling that there was some resistance to breathing (but not to the extent that I would call shortness of breath). I expect that any new side effects I experience in the coming weeks will be due to the Cisplatin.

Link to comment
Share on other sites

Hi Ned,

I haven't posted here in ages, but I do check in often and try to keep up on how everyone's doing.

This log is a good idea and I think it will be helpful to others. I hope the Alimta works out well for you and stops those nodules!

I wish you all the best.

Link to comment
Share on other sites

Ned, I can't help you with the physical labor but I'd gladly contribute some weight if you need it.

Sounds like you are handling the side effects with your usual strength and determination. I am going to put this hiccup remedy out there. People laugh and pooh pooh it (I did as well), but everyone who has ever tried it becomes a believer. I assume it will work with medicine induced hiccups as well as the regular garden variety. Fill a glass of water. Have someone hold it to your mouth and gradually tip it so you can drink while you have a finger firmly in each ear. Keep drinking without stopping for as long as you can. I promise you it works.

Good luck and keep doing what you're doing. It sounds good to me.

Judy in Key West

Link to comment
Share on other sites

Judy said:

Fill a glass of water. Have someone hold it to your mouth and gradually tip it so you can drink while you have a finger firmly in each ear. Keep drinking without stopping for as long as you can. I promise you it works.

Wouldn't waterboarding be just as effective?

Ned

Link to comment
Share on other sites

Neil said:

Ned--I have hiccups every Alimta cycle. They start the night before the infusion, and they end the second day after. Thus, they are clearly Decadron-related.

That makes sense. Maybe it's just the oral version that does it — I never had hiccups when I got the IV Decadron during my Taxol months. But that was just a one-shot deal instead of spread over 3 days.

Ned

Link to comment
Share on other sites

Ned, you scoff and you'll keep your hiccups LOL. It isn't difficult at all. You just have to get over looking a little silly and taking the chance your wife won't drown you if she's holding the glass. I swear it works every single time!

Judy in Key West

Link to comment
Share on other sites

Maybe she wouldn't drown me on purpose, but I know she'd start laughing and that would be it. With the other technique I don't think anybody would be laughing, and I don't think they'd let me completely drown. Or maybe I'll just hold in a deep breath as long as I can, which works pretty well too. Nevertheless, I'll keep the idea in reserve!

Ned

Link to comment
Share on other sites

  • 2 weeks later...

Several have asked about updates to "My Alimta Log." Though I've been adding log entries periodically, they have been edits to the original post (at the beginning of this thread) instead of new posts, so they haven't been showing up in the "View posts since last visit" feature that many of us use. This bump message should accomplish that. There's also a link directly to the log in my signature/profile.

Thanks for asking, and so far so good — but I won't know if Alimta is actually working for a few more weeks. Aloha,

Ned

Link to comment
Share on other sites

Keeping my eye on your log and keeping you in my prayers...daddy had hiccups too, I think it just happens to some people although I get a kick imagining you with your fingers in your ears gulping water..don't forget to hop on one foot too...

:lol:

Link to comment
Share on other sites

Ned-

So glad you are doing good on the Alimta. The only side effects I ever had was some fatigue and SOB but that was after I had been on it for several months and it was quite doable.

Fingers, toes and even my eyes crossed for a GREAT scan on the 30th!!!

Hugs - Patti B.

Link to comment
Share on other sites

Ned,

Thanks for the update on the side effects. I am sure that it will help many others who are on that regimen, or might well be in the future..

So glad things are going fairly smoothly with the Alimta for you.

Bill had a pretty easy time of it, and remembers that his only big time down time with it was fatigue (which would fade in a few days). However, it did work for him and kept him stable, or better for quite some time.

I will keep checking here for updates in March.

Much success,

Barbara

Link to comment
Share on other sites

  • 2 weeks later...

I've added a few more updates to the log at the beginning of the thread. Right now I'm sort of bummed out that the foot/ankle/calf swelling and stasis dermatitis which flared up toward the end of my Taxol/Carbo treatment is now flaring up again. This problem started before I ever got lung cancer, but some treatments seem to further reduce lower leg circulation and make the condition worse, and Alimta is apparently one of these. If anybody has any tips for dealing with something like this other than diuretics, skin care, and elevating the legs, I'm all ears! Aside from this problem I'm feeling really good, which makes it even more infuriating. :evil:

Ned

Link to comment
Share on other sites

Ned,

I am sorry about your having to endure the poor lower leg circulation.

Have you asked the doctor about using the hosiery for that but being sure to eliminate that there is any problem with clots?

Glad to know that you are feeling well, otherwise.

Hope someone comes up with an effective solution for you, Ned.

Barbara

Link to comment
Share on other sites

There is a light/laser therapy called Anodyne Therapy that helps with circulation. It is used a lot for diabetics having circulation problems and for wound healing. My mom had it for a wound on her leg and it was very effective at improving the circulation which promoted healing of her leg. Her is a link:

http://www.anodynetherapy.com/

Hope this helps. Also, I would check on the blood clot scenario also. Take care.

Link to comment
Share on other sites

Ned, As usual you are doing a great job on your log. What discipline! My husband gets occasional bouts of gout so I know about the foot elevation when you otherwise feel good. Hope you get that under control.

Tina, thanks for the info on the therapy for circulation. I have a 78-hr-old friend who is not diabetic who has an issue with a wound that won't heal. She appears otherwise quite healthy altho she had and kicked lung cancer three times in six or seven years. Last time six months ago, successful cyberknife. I love having this info to pass on to her because it's been quite bothersome to her. She's been going regularly to have it checked with no really positive results. But I always say we have third world medicine here in Key West.

Judy in Key West

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.