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

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.

39 responses to “Getting tired of this crap

  1. You might never by ‘regular’ by my standards, because you’re extraordinary in so many ways. But I do wish for you health, and a very regular, ordinary summer!

  2. Whole leaf Aloe Vera Gel. Mix it with OJ or some other juice if you are experiencing mouth sores. It has potent laxative effect and my help with healing the mouth discomfort.

    Blessings to you.


    • Tracy, I’ve got to give the Aloe a try. I have heard it really helps with the mucus membranes in general (and I’ve always had an aloe plant around for treating superficial burns). Thank you!


  3. donna schielack

    Amen lady I am with you all the way…on Alimta #16 maint coming next week after 4 tx OF CARBO/ALIMTA…so combined is #20 TX!!!. Yet it is a milder chemo it remain very very tough to cope, regardless!!! God Bless. Grace and Peace. Love ya Donna

  4. Bless your heart lady…I sooo hear ya. Love ya mean it Donna

  5. Oh what about extreme fatigue…mine is beyond like many others!!!

    • Donna, that is the irony—it is a milder chemo and that’s why I shared that ridiculous list of side effects. Even the ‘milder’ treatments can kick your butt.


  6. Aww, I really feel for you. It’s so tough sometimes, but it’s ultimately worth it since we are still around! Take your break…you deserve it and try to enjoy the rest of the summer. Always thinking of you and learning from you.
    Take care.

    • Roni, you are right. Mixed in with my whining is unwavering gratitude that treatment is even an option. That said, I look forward to a short break! You take care too…


  7. My most dreadful side effect of Carbo/Alimta was inexplicable fears: of being alone, washing my hair, eventually even showering was frightening. I wish you well.

    • Ann, I was very fearful the first time I had chemo—it is so mind/body altering, and I there is no way to predict how we will be affected. Thanks for sharing and I wish you the best as well.


  8. Have you tried adding organic Smooth Move tea to your Colace? This combination just worked for my husband who is on weekly chemo and pain meds for extensive lung mets to the spine and pelvic bones. He drank the tea two nights in a row with relief the first night, and no need of it the third.

    Praying that you have an enjoyable chemo break.


    • Deborah, I’m making a note of all of these remedies! I will definitely try Smooth Move (I have used the Breathe Easy, likely from the same company). I feel for your husband on so many levels; pain presents so many challenges and unfortunately, as you know, the pain meds have their own set of side effects (constipation being a prominent one).

      love and good wishes back,

  9. I know linnea. You deserve it. Take the summer off have the best freacking summer possible. I will be raising my glass to you all summer. Sean xxx

    • Sean, if my liver levels have come done in a month (not super elevated, but edging up again), I may be raising a glass myself. In the meantime, I appreciate you doing it for me 🙂 And happy, incident free summer to you my friend.


  10. Sharon Burrell

    Try magnesium oxide 400 mg. 2 or 3 of them at bedtime depending on how stubborn your problem is. With lots of water. It’s like Milk of Magnesia in pill form with none of the side effects. And you surely don’t need any more side effects ugh. Feel better soon and have a nice summer!

    • Sharon, yet another possible remedy to add to my list—the lack of side effects is highly promising! Thanks, and the best to you.


  11. Have you ever heard about or tried a coffee enema? They work wonders and are also very detoxifying!

  12. Oh I hear you on that. Love the double entendre, though. (“regular” person ha ha). And I know you will live in every single moment of that chemo break. xo

  13. How I feel for you. I am just past my 7th round of alimta and whilst I have little in the way of side effects it can get so hard stepping up to treatment every three weeks, with the only end in sight being a bad one!

    I find after 4.5 years that people are bored by my cancer, and the fact that I have a terminal illness has been forgotten. It’s not just my new normal, it’s theirs as well. And whilst we keep going to treatment and dealing with all the associated crap, it’s largely been forgotten by friends and acquaintances

    I truly hope you enjoy your break, feel relatively normal, and kick some arse.


    • Gail, continuous treatment, even with milder side effects, does a number on one mentally (just keep backing off this cliff!). And living in this world where cancer and terminal are never far from your mind (but not necessarily obvious to others) presents its own challenges. This is where I am so grateful for the chance to connect with others who understand and/or are simply not bored (ie, interested in this journey). It makes it all so much less isolating. Take care and good luck.

      Linnea (soon to be arse kicker)

  14. I’m glad to hear that you’ve earned a break! Here’s to being regular in every possible way! xo

    • Thanks Jessica. I know you are well acquainted with the potential GI side effects of treatment. Let’s both be regular girls!


  15. Matthew Robson

    Who needs short term memory when you can list all that you’ve been for and still finish with a pun?! Enjoy the break.

  16. Hi Linnea – I would have made the exact same choice as you – enjoy your summer! (Happy Solstice a day late!). Also, I loved your Daddy Day tribute – he sounded like a wonderful Dad! -DK37

  17. A month with no appointments, no treatments sounds like Heaven here. Do enjoy it, maybe the short term memory lapse can allow you to forget this messy journey. Get out and soak up some sun, laugh and love. Make it a true vacation of the spirit as well as the body. Steve is back on strong pain meds which means crazy thoughts, garbled words and wacky walking. Oh the joys, of constipation too, of course. We will try some of these ideas from your friends. Thanks. Stand strong, play hard. 😉 Hedy

  18. Linnea: These food items may relieve your constipation. Flax seeds, ground and kept refrigerated. Chia seeds and/or MILA. . A product sold only through MLM. Good luck and here is to a restful summer. Shiela

  19. Dear Linnea, enjoy your break and have a great summer with your family. I know constipation is no fun. I am drinking the organic smooth move with senna herbal stimulant laxative tea now. Whenever I have no stool for one day, then I take the tea and it usually work for me.
    Take care. Joan

  20. Dear Linnea,
    a treatment break in summer sounds like an excellent plan! I had a 7 day break from Tarceva during radiation and enjoyed it like a holiday (even if one treatment was replaced by another). I decided that the only positive side effect of Alimta and constipation is that you gain weight…. at least I did last summer, and those few pounds were actually very needed.
    Wish you could have joined our midsummer party the other day, it would have made it even greater!
    Strong and sunlit hugs for you,

  21. Its a short term fix, it only lasts a few hours and not at all holistic, but my Dad used ritalin to combat the overwhelming fatigue of Alimta. Enjoy your break.

  22. So good to hear that you get a break! And stable, too. I gave you a shout-out on my latest post.
    Sending love and prunes, my dear one.

  23. I would always say I’m tired of being tired! A tough decision to stop for a while. I’ve made that decsion before and don’t regret it a bit.
    The human body can only take just so much abuse. Enjoy your time off.

  24. Yea, that’s what you call a real Summer Break! I’m so happy you have this to look forward to. After the unholy elixir starts working, that is. XO W

  25. Enjoy your much needed break.

  26. Thank you for postin thus. I hope you’re in remission. I had part of my lung removed when I was diagnosed in June 2014.

    My doctors were confident they got it all, but a CT and PET showed otherwise. Now I’m on round 2 of carbonplatin and alimta.

    The side effects are the worst; nausea like sea sickness, even with Varubi. Headache, chills, aches, constipation, diarrhea, feeling full yet hungry. I could go on and on.

    I’ve decided after 6 rounds I’ll stop there and start back with my herbalist to detox the chemo out of my body and boost my immune system.

    If you haven’t already, cut sugars in your diet. Sugar feeds cancer like no other.

    Great blog. Be well fellow lung cancer warrior!

    • Sylvia, obviously I wasn’t fond of this combo either. Thank you and best of luck to you (and I too eschew sugar).

      xo Linnea

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