Damage control

I am still experiencing significant peripheral neuropathy. Specifically, decreased sensation in my fingers (such that buttoning my coat is difficult) and my toes as well. Thankfully, my face–nose, tongue, throat, lips, are just about back to normal. However, there is one uncomfortable detail that I have not yet shared:   the muscles of my pelvic floor have gone bonkers:  uncontrolled muscle contractions every few seconds accompanied by burning pain. The level of discomfort verges on extreme and is the sort of thing that, should it continue unabated, could just drive me crazy.

This unpleasant scenario seemed to begin with a urinary tract infection on Christmas eve. I had a previously scheduled appointment with a urologist two days later, and I described the sensation to him. At that time we both felt it was related to the UTI. However, even after the infection cleared, the urethral spasms continued. Before long, the neighboring muscles got on board (yeah, those muscles). I contacted Dr. Shaw and allowed that this might in fact sound crazy, but that it was very, very real. She prescribed neurontin, which has helped dull the burning pain but had no impact on the contractions.

I have looked online but found very little to corroborate my experience. Certainly the fact that I had four rounds of cisplatin and taxotere (both highly neuropathic) in 2005 made me more susceptible to subsequent peripheral neuropathy. And it is not without personal precedence. Platinum has the potential to be the gift that keeps on giving, with progressive symptoms of neuropathy weeks to months after the final infusion. In November of 2005, a little over two months after my final dose of cisplatin, I experienced the very same situation; burning sensations and extreme spasticity–also referred to as hypertonic muscle spasm–in the perineal region. I was so miserable (and freaked out) that I ended up in the emergency room at MGH. There were no findings, other than the fact that I had recently had a urinary tract infection. The discomfort continued for several more weeks and then finally disappeared. At that time, it never occurred to me that my symptoms could represent peripheral neuropathy.

As to why it has affected my pelvic region, I can only suppose that there had been previous injury to the nerves serving that area. I joked with Dr. Shaw that the 10 pound 4 ounce baby might have been a contributing factor. Further research revealed that there are certain risk factors for pelvic floor neuropathy that are associated with childbirth. High birth weight (that big baby was not delivered by cesarean section), forceps delivery (first birth), extended and active second stage (first and third labors).

On Wednesday I have an appointment with Dr. Shaw followed by my second round of chemotherapy. The data  suggesting that progression free survival is longer when Alimta is combined with carboplatin is persuasive. If the neuropathy has cleared up by then, I will consider going with a reduced dose of carboplatin. However, if the pelvic neuropathy continues, I will choose to go with just the Alimta.

Ultimately, I value quality over quantity.

22 responses to “Damage control

  1. One of the many funky things about this path is that we don’t theoretically choose what we value in life. We ACTUALLY choose what we value in life.
    Still, I will hope that the neuropathy subsides.

  2. Linnea – thanks again for sharing. We never know who this information is going to help going forward… but it will. Sympathy to you, and hopeful that sympathy is of some comfort.

    Just wishing you peace and comfort, and totally think your rationalizing the situation correctly.

    wish i could share all our kindred similarities somehow. I found you via researching, but we have so awfully much in common, and I’m a huge fan. You are so darn eloquent, and fun– even when things are so challenging. I keep rooting for you Linnea!


  3. Dearest Linnea,

    I was recented misdiagnosed with an intestinal infection for which I was prescribed high doses of Flagyl, a potent antibiotic with some horrible side effects. This also causes peripheral neuropathy which took the form of burning in my hands. It’s only one of the many side effects I experienced. Shortly thereafter I developed a UTI. The infection cleared with yet another antibiotic, but the spasms you describe lasted for weeks after. I researched a connection as well, but couldn’t find anything. I felt certain it was neuropathic pain related to the Flagyl. I am still battling the side effects of the misdiagnosis weeks later.

    I hope this helps.

    Blessings to you.


    • Tracy, I am sorry for your own situation but this does help. It is hard to be the exception to the rule. When I experienced insomnia with levaquin and macrobid, it was the same thing; very hard to corroborate. However, we know our symptoms are not imaginary, corroboration or not. Neuropathy is something that is hard to measure quantitatively, and so, I believe, sometimes not given it’s due in medical/scientific literature. For the person who is affected, it can (as you know) be debilitating. Now if someone googles this, they may end up finding this page, and know they are not alone. Thank you for sharing your experience, and may you soon find relief.


  4. it is such a gift to get the word out on these terrible side effects and actually get word back from others who have experienced similar or the same problems. I wish things were easier, but glad you have some answers that this will hopefully subside. I don’t think many people understand just how many medical issues come up related to trying to stay alive with treatments, etc. My heart is right there with you my friend, every single day. I wish for you to find relief & answers. love you

    • Hey Lorraine, I do suppose that’s part of why I’m spelling it out. I knew absolutely nothing about cancer (except that it was something to fear) until I was diagnosed. And I realize that just telling someone that I am experiencing peripheral neuropathy is not very descriptive. I hope that someday traditional chemotherapy will be relegated to the history books…and that people with cancer won’t have to fear the side effects from treatment itself.

      love, Linnea

  5. Your openness is such a gift. Your experiences are no doubt valuable for others in similar medical situations and how generous of you to share these personal details. It is also valuable to me as I would never have imagined such complications. I have such admiration for you for your willingness to allow us to know what you are really facing.

    • Thank you. Cancer is complicated, both the disease itself and the treatment, and obviously not everyone’s experience mirrors my own. I consider myself fortunate that I was able to take advantage of targeted therapies for so long. Now, I must return for a time to a more traditional method of treating cancer. My hope is that it will simply be a bridge to yet another experimental therapy.


  6. Linnea,

    I recently underwent a routine colonoscopy and endoscopy. With the exception of diverticulosis, which I am told is common at my age, the results were normal. In spite of this, the gastroenterologist took 5 biopsies, one of which became inflamed. I ended up in the ER the next evening with a diagnosis of “mild diverticulitis”. The gastroenterologist stated this had nothing to do with the colonoscopy, but since it wasn’t there prior to the procedure, I bet to differ. In any case, I was put on Levaquin, making this 3 antibiotics in two months. The Levaquin had it’s own set of side effects, anxiety and sleeplessness being amongst them.


    • Tracy, what a debacle. I suppose the gastroenterologist was simply being thorough, but it is a shame that you ended up with unnecessary complications. Also interesting to hear that you experienced insomnia from levaquin. Be careful of that antibiotic—it can have a host of side effects and insomnia can be a sign of neurological impact. I hope that your life shall be more uneventful in the weeks to come.


  7. Linnea,
    Just to let you know I am thinking about you. If it’s not one thing it’s another and you handle each and every setback with such grace (and humor). You are truly an inspiration. Hoping for a better tomorrow.

  8. What a dark comedy this disease and its treatment produce for the patient. Gilda Radner said it all, “If it’s not one thing, it’s your mother.” Stand Strong.

  9. Hi Linnea, it has been a while since I’ve read your blog and I was disappointed to see that you are on chemo again. You have been such a rock star over the years and I don’t see any sign of that diminishing. You and I have the same cancer and I am so familiar with the bronchorrhea you mentioned. However, I can top you because I have been known to cough up about 20 to 30 ounces of that frothy liquid during the night. I sleep with a spittoon next to me and now I think I have mastered sleeping and spitting up at the same time. However for the past two years I have only been able to sleep on my left side, there is just too much fluid when I lie on my right side and it is impossible for me to breathe. I even carry my spittoon during the day because when I laugh or cough I’ll spit up some of that stuff – well, I’ll discreetly swallow it if I’m in public but I prefer to spit it up.

    Speaking of dogs. I just read a delightful book that you might enjoy. It is called “Following Atticus”. It is a love story between a man, his miniature schnauzer and hiking. They live in New Hampshire and try to hike all 42 (?) peaks above 4,000 feet twice in one winter. I absolutely loved it, started it a second time when I finished it.

    I want to send you an email of a presentation I gave last month, it relates to the post you put up about how cancer has changed our lives. When you have a chance will you send me your email address? Good luck with round two!! Love, Melanie

    • Okay Melanie, you win (not that you want to). I can’t imagine that much fluid but I can definitely relate to the sleeping on one side–I can no longer sleep on my left side and even my back can be a challenge (and I was a life long back sleeper). Email coming your way!


  10. Dearest, my heart goes out to you–of course, my prayers do too! Love you so much! Hate cancer totally!!! Hoping for the best tomorrow!!

  11. Hi, I just read your post and I have had to discover on my own that I have Hypertonic Muscle Spasms that go along with my Fibromyalgia, which make them that much more painful. So far Tens from Chiropractor and message therapy are all that help & I found that Stress & repetitive actions such as typing kill me, as I struggle to continue to work. The 5 previous back surgeries are nothing in comparison to Fibro with Hypertonic Muscle Spasms. I recently went to every Doctor Specialist conceivable, only to find that there is no such thing as a True Muscle relaxer or a Muscle Doctor. So on my own I am researching online, how to find a solution to this Muscle spasm issue (not Charlie-Horse, more like tense muscles that will not relax).
    I appreciate seeing that others are sharing their issues, which give me a path to hope. I have tried Electrolyte supplements with little help & am looking for something to lower the Lactic Acid build up in my muscles, which trigger the Brain to contract the muscles. I know there must be an answer somewhere & more than likely it will be Holistic.
    Thx for your story.
    Tim H

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