Tag Archives: Alimta

Getting tired of this crap

I had a CT scan on Monday and my review with Dr. Shaw yesterday. It was also to be my ninth round of alimta (four of carboplatin/alimta, followed by maintenance of alimta every three weeks). However, at my last infusion, I told Jen Logan, Dr. Shaw’s wonderful nurse practitioner–that I was ready for a break.

Except for washout periods and brief drug holidays due to extenuating circumstances (liver toxicity and surgery)—I have been in treatment for five straight years now. That’s a long time. And although my current regimen is tolerable, it still comes with a laundry list of possible side effects. To wit, copied from Drugs.com:

Alimta Side Effects

“Check with your doctor or nurse immediately if any of the following side effects occur:

More common

  • Black, tarry stools
  • bleeding gums
  • chest pain
  • chills
  • cough
  • fever
  • loss of coordination
  • lower back or side pain
  • painful or difficult urination
  • pains in the chest, groin, or legs, especially calves of the legs
  • pale skin
  • pinpoint red spots on the skin
  • severe headaches of sudden onset
  • shortness of breath
  • sore throat
  • sudden onset of slurred speech
  • sudden vision changes
  • swollen glands
  • troubled breathing
  • ulcers, sores, or white spots in the mouth
  • unusual bleeding or bruising
  • unusual tiredness or weakness

Less common

  • Bloody urine or bloody stools
  • decreased frequency or amount of urine
  • fainting or loss of consciousness
  • fast or irregular breathing
  • increased blood pressure
  • increased thirst
  • itching
  • loss of appetite
  • nausea
  • skin rash
  • swelling of the eyes or eyelids
  • swelling of the face, fingers, or lower legs
  • tightness in the chest or wheezing
  • vomiting
  • weight gain

Incidence not known

  • Blistering, peeling, or loosening of the skin
  • joint or muscle pain
  • pain and redness of the skin in the area of earlier radiation treatment
  • red skin lesions, often with a purple center
  • red, irritated eyes
  • stomach cramps, tenderness, or pain
  • watery diarrhea

Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health careprofessional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

More common

  • Burning, tingling, numbness, or pain in the hands, arms, feet, or legs
  • confusion
  • cough or hoarseness
  • decreased urination
  • diarrhea
  • difficulty having a bowel movement (stool)
  • difficulty with moving
  • difficulty with swallowing
  • discouragement
  • dizziness
  • dry mouth
  • feeling sad or empty
  • hair loss
  • headache
  • heartburn
  • increase in heart rate
  • irritability
  • lightheadedness
  • loss of interest or pleasure
  • mood changes
  • muscle aches or cramping
  • muscle stiffness
  • pain or burning in the throat
  • pain produced by swallowing
  • rapid breathing
  • sensation of pins and needles
  • stabbing pain
  • stuffy or runny nose
  • sunken eyes
  • swelling
  • swelling or inflammation of the mouth
  • swollen joints
  • thinning of the hair
  • thirst
  • tiredness
  • trouble concentrating
  • trouble sleeping
  • weight loss
  • wheezing
  • wrinkled skin

Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional.”

Not much fun, huh? I’ve personally experienced nausea, diarrhea, constipation. Rather stunning fatigue that lasts for almost two weeks each infusion. Sores in my mouth and other places I’d rather not mention. Creased and dimpled nails on my fingers and toes, hair loss (it is coming in thick on the crown of my head, but is yet sparse everywhere else), and a tongue that feels as if it is scalded. Rheumy, reddened eyes and rapid recession of my gums. Dry mouth, puffy eyes, and wheezing. Bloody nose and sloughing/flaking skin. And although I hoped I might bypass cognitive deficits, it is clear my short term memory is rather shot.

Fortunately, my latest scan showed stability and Dr. Shaw was onboard for at least a short break. I will see her again in a month and we will reassess. In the meantime, I look forward to a steroid/alimta/treatment-free summer. However, before I can truly enjoy myself, I need to resolve a stubborn case of constipation. Thus far an unholy mixture of water, fiber, prune juice, senna, colace, lactulose, glycerin suppositories and even a fleet enema have made but a dent in my problem.

I really just want to be a regular person.

One hot mess

Time to make some excuses. It was my intent to have part two of my trip to Utah up days ago. My infusion on Thursday was without incident, and on Friday I checked off the items on a fairly ambitious day-after-chemo list. However, I also cut way back on the dexamethasone (steroid) this time:  two, two, one, none—or, over and out by Friday afternoon. Of course, by Saturday I crashed, and the sudden heat wave simply contributed to an overwhelming sense of torpor. All volition vanished, and I focused what little attention I could muster on replenishing my fluids and following the plot line of The Cloud Atlas (what a long and ridiculous movie). Staying hydrated proved easier than comprehension, and when dinner presented additional challenge—chew, swallow, think, repeat!—I began to wonder if I might have backed off the steroid a little too quickly.

I slept quite soundly Saturday night; for almost twelve straight hours. Of course, that is the upside of my decision to cut back on the dexamethasone. The oppressive heat was a little softer yesterday—the heavy air pushed around by gusts of wind. A glass of iced coconut water in hand, I spent much of the day anchored to the couch directly in front of the blast from an industrial sized fan.

Almost as clean as a newborn baby

Almost as clean as a newborn baby

In the meantime, David has been opening the pool for the season. When he peeled back the heavy green cover on Friday, twelve frogs in various states of decay decoupaged the bottom. A dead amphibian—or even a mouse or vole, is not uncommon as we proceed through the summer, but twelve at once was a new (and somewhat distressing) record. It was going to be necessary to drain two thirds of the water in order to change the bulb in the pool fixture and to redo some caulking. I was in favor of flushing out all of what I now felt to be a bacterial broth, but David was sure that ‘shocking’ the pool would be sufficient (for Centers for Disease Control and Prevention guidelines on what to do when you find a dead animal in your pool, click here. And pay special attention to any raccoons that may have fallen in and drowned while washing their dinner.).

Well, David finally came around to my way of thinking, which was generous of him as he would be doing all of the work this time around. And what a job it has been. Or, as he says, “this is how much I love you”. Which is, I feel, beside the point—and my rather pathetic line anyway. Just ask Pete. When I pulled up to school on Friday and handed him an icy drink from Starbucks, I repeated a version of the same line. Different context, same underlying plea:  I hope you notice the effort I am making on your behalf.

And I do, I really do.

It rained last night and the air has cooled. With the help of an ambien, I enjoyed a second night of sound sleep, troubled only by dreams of a headmaster who would not let me out of the bathtub to attend recess. A little hungover from the ambien, I’ve got one nap under my belt already this morning—it is now time for a second cup of coffee. By this afternoon, I should be ready to tackle Vegas.

Moving slowly and possibly requiring assistance

Minder
A minder is a person assigned to guide or escort a visitor, or to provide protection to somebody, or to otherwise assist or take care of something, i.e. a person who “minds”. Wikipedia

I am no longer the perpetual motion machine of yore; my fourth and final round of carboplatin and alimta left me fatigued and with a profound lack of energy that I just can’t seem to shake. In two days I undergo maintenance infusion of alimta, and the hope is that it will be significantly easier minus the platinum.

The virus I have been fighting is beginning to take leave, but slowly; it is clearly one persistent bug. And, although I was pleased when I started chemotherapy that I did not immediately descend into a fog of confusion (as I had with cisplatin and taxotere) I can no longer deny that there has been a cognitive hit as well. I was once a bit sharper. To wit, today I put the kettle on to boil some water for tea, and then lay down for a nap. Fortunately David came downstairs in the nick of time, but I’m becoming somewhat of a menace.

So please, if you have emailed, written or called and I have not responded, understand that I may have simply forgotten. Yesterday Peter was streaming some music and I asked him for the name of the group. After he shared with me both song and artist I said “Got it” to which he responded (without a moment’s hesitation) “Yeah, right.” And he was—I retained neither.

Hits and misses

From the inside looking out this morning

From the inside looking out Saturday morning

The blizzard rolled in right on schedule Friday, but fortunately, we were graced with a big dump of snow but never lost power; nature in all its glory is sometimes best appreciated from a snug environ.

I had my third infusion of pemetrexed/carboplatin on Thursday. As the last round turned out to be so manageable, we decided to ramp up the platinum a bit, and for the first 48 hours, I felt pretty good. However, yesterday I skipped my afternoon zofran and began ramping down on the dexamethasone as well. By early evening I was seriously nauseous, and experiencing some pretty intense heartburn and a headache. I took a compazine, and when that had no effect, added zofran and dexamethasone. Soon I was feeling better again–I can’t begin to imagine how difficult chemotherapy must have been before the advent of steroids and antiemitics. Thanks to an ambien, I was able to sleep, and hopefully today I can again back off on medication.

So—lots to share. I think I’ll start with the visit to the Avon Breast Center at MGH. After the concerning mammogram on Tuesday, a sterotactic biopsy was scheduled locally. However, I immediately contacted Dr. Shaw and asked about having a consult at MGH instead; if the situation required treatment, it only made sense to coordinate my care right from the start.

Well, the magical Dr. Shaw got me an appointment on Friday afternoon. Because of the impending storm, it needed to be cancelled, but they were able to squeeze me in Friday morning instead. Once there, I met with the surgeon, who performed an exam and immediately found a lump (that had been missed previously) in my left breast as well. And then I had some more mammograms done, this time using a 3D imaging machine. After a short wait, more close-ups on my right breast, and then an ultrasound of my left breast.

The conclusion: likely benign fibrocystic changes in the left breast and a 99.5% chance that the microcalcifications in the right breast represent non cancerous changes. So I won’t need to undergo a biopsy and instead will have a repeat mammogram at the Avon Breast Center in six months. The moral of this story would seem to be, whenever possible, (and particularly when your medical history is complicated), get yourself to a center with the best diagnostic apparatus available as well as the expertise to interpret those results.

So that was great, great news. A good thing too, as my scan prior to chemo on Wednesday was not quite as encouraging:  “Mixed treatment response with interval decreased groundglass opacity in the left lower lobe, though slightly increased let lower lobe consolidation and slightly increased mixed solid ground/glass opacities in the right upper lobe.

In addition, the results of the initial genetic sequencing of the ALK mutation are in (it remains to be seen if full genetic sequencing can be performed, as my biopsy  sample was quite small and will require a cell line to be grown in the lab—something that may or may not be possible). The secondary mutation that showed up post crizotinib (S1206Y) is nowhere to be seen. In its place is G1202A, also a missense mutation on the solvent front, but unfortunately one which confers a good deal of resistance to all ALK inhibitors. This will potentially limit treatment options, and the mixed treatment response may necessitate a change of course sooner rather than later.

I am focusing on the fact that except for the few days post chemo, I am stronger than I have been in months. In fact, although I still have a small amount of wheezing and an occasional cough, the copious amount of  nighttime sputum has disappeared. Hopefully the resolution of this troubling side effect correlates with the positive response. However, given the mixed response, I do wonder if there is a chance that the resolving groundglass opacity might have been an inflammatory response to the LDK378 (pneumonitis has been observed as a rare side effect in patients treated with crizotinib).

At any rate, there is no way to know and the important thing now is that I am feeling better. One more round of pemetrexed and carboplatin and then, unless a subsequent scans reveals significant progression, I will go on pemetrexed (Alimta) maintenance. One round, one week, one day at a time.