Chemo2010, Week 4

It’s Friday, and that always makes me want to wrap things up in a pretty bow and call them “done.”  (Even though I get most of my work done during my workhorse Saturday and Sundays, when my husband is in charge of the house and kids.)  Anyway, here’s how things went down, week 4 of #chemo2010.

A week ago, I participated in a special NASA event celebrating the 25th anniversary of the first comet encounter.  I went casual, in black pants and my BlogHer/Gap black cardi, and had a wonderful time seeing old friends and colleagues, hearing about space history, and getting briefed about the next two comet encounters (4 November and 14 Feburary) as well.  I livetweeted it, with NASA’s blessing, and intend to write about it — right after I add it to that chapter in my book.  (So, next week?)  I was back in time to pick the kids up from school, and I felt GREAT.

Five days ago, we met a mom of one of Little Bear’s little friends at the park for lunch. It was a lovely break, if a little surreal to be hanging out at the park again talking playgroups with the mom of a toddler and a preschooler.  Mine are so much bigger now….  We ran and laughed on the playground, and I pushed them on the swings.

Four days ago, I went to the oncologist and was cleared to start Cycle 2 of chemo.  Of course, the pharmacy had a snafu, and the pills weren’t ready.  So we went out to dinner instead. YUM.

Three days ago, the kids and I campaigned for a dear friend, Aimee Olivo, waving signs, talking to voters (me), and generally looking adorable (them).  We stopped by the pharmacy on the way home and I took my chemo after the kids went to bed.

Two days ago, I sloooooooooowed way down, feeling weak and tired, even though we hadn’t planned much for the day.  I lost my appetite completely, and just concentrated on writing quietly for the day.  I finished my work, picked up the kids, and took them to the park after school.  I sat on the bench with the moms, and picked up chicken from the deli on the way home.  I didn’t want to, but I kept taking my chemo pills.

Yesterday, I crashed.  My bones ache.  My stomach hurts.  The nausea is back and wouldn’t leave at all yesterday.  I feel … weak, which makes me feel even worse.  I called “uncle,” called friends who would take the kids after school, accepted dinner from another friend, called rescue to find a new place for the puppy, and called my parents to come down and help me this weekend.  Then, back to bed.  #Chemo2010 SUCKS and I HATE it and I most of all despise feeling WEAK. 

All I can do is write, but I have to look on the bright side.  I still CAN write and CAN think and this chemo will not affect that AT ALL.  It makes me tired, but I can work through it, and feel good about still contributing to space science.  (In fact, I published on WPS, talked to a science journalist about presenting research online for broader science impact, and had a space history article selected for publication just this week!)  Chemo2010 sucks, but I WILL NOT let it dictate my life.

14 Responses to Chemo2010, Week 4

  1. pinkpockets says:

    Sending you best wishes on this chemo trip. Traveling Mercies, as Anne Lamott writes in her book of the same title. I attended the BlogHer conference this year – having had a mommyblog and now wanting to write one is support of my new business – Pink Pockets. I invented a pocket to hold drains after surgery. You attach to clothes. Peel off when done. No need for special clothing. I continue to hear from other Pink Sisters – I wish I had that when I had my mastectomy. I finished chemo for my bc in May of last year and still suffer from chemo brain. That or my 4 children are making me slowly insane. Anyway – my best wishes to you. Looking forward to following you on your journey. Best wishes.

    Diane in Austin, Texas

  2. Mama Echo says:

    Thinking and praying for you Whymommy!! Glad to hear you can still write (because I’m selfish and like to read your blog) and glad that you called “uncle” and let people help you. In fact you have an army of readers that would love to help. You might just need to start making up jobs for us to do so we feel part of your team. 🙂

  3. Diane says:

    Thinking of you and never forgetting how hard this must be for a mom.I wish for you many strong days feeling good very soon.
    I have a team together here in Fairfax, VA from our school Laurel Ridge for Making Strides/DC in Memory of Meighan my sister- in- law from NY that fought her late Stage IBC as hard as anyone could. Also for mom’s like you that are today being mom’s and in tough chemo…Know I will look forward to hearing your strength has returned in full force.
    Take Care Please-

  4. Sunday says:

    Just want you to know that I (and many more) are praying hard for you during these difficult days ahead.
    I know how hard it is for me as a mom to call out for help when life gets complicated or in your case, painful and absolutely draining. But, I am so glad that you did.
    Please know that I am always here (just a little farther north) and am happy to drive down and help out or run errands or anything you might need…ANY TIME!

  5. Karen says:

    I am praying for you. I am so glad I found your blog. You are such an inspiration and a fighter.

  6. Kami says:

    Hang in there, this to shall pass…your one tough woman. 🙂

  7. You have been so much in my thoughts!! I’m sorry to hear this one is rougher – I hope it gets better. ((((GIANT HUGS AND CANCER-ASS-KICKING ENERGY))))

  8. jana says:

    Sorry to hear that the Xeloda side effects have rudely rained on your parade. Just a reminder… if you have not started taking glutamine yet, that would be wise, in order to alleviate those obnoxious side effects (and to help prevent/ mitigate other potential Xeloda side effects, like neuropathy and “the hand-foot syndrome.”)
    When I checked the Sloan Kettering website last month, it still said “no adverse effects have been reported” about glutamine.
    FYI, here is a copy of a round-up article (with references):

    “Preventing/Treating Possible Side Effects of Chemotherapy

    Using Glutamine for Protection Against Chemotherapy Toxicity — By taking glutamine, it might be possible to prevent/delay the onset of peripheral neuropathy due to taxane chemotherapy.

    Updated 6/21/2007 by H. Hansen.

    More and more men are receiving taxotere (docetaxel) as their 1st chemotherapy for hormone-refractory prostate cancer. The standard, US FDA approved treatment is 75mg/m2 of taxotere given every 3 weeks. Not all patients experience peripheral neuropathy, the phase III trial (TAX327 – NEJM 2004;351:1502-12) toxicity data found that a 30% rate of occurrence of sensory neuropathy of any adverse event grade. A separate category gave a 30% rate of occurrence for nail changes of any adverse event grade.

    As Aishman writes below, glutamine can help prevent or at least delay the onset of peripheral neuropathy. A recent paper in The Oncologist (Wei-Shu Wang et al, Oral Glutamine is Effective for Preventing Oxaliplatin-Induced Neuropathy in Colorectal Cancer Patients, The Oncologist 2007;12:312-319) reports successful results using 15 grams twice a day for seven consecutive days every 2 weeks starting on the day of oxaliplatin infusion. Table 2 from that paper has the results. While this study was not with a taxane, it does show how effective glutamine can be in preventing peripheral neuropathy.

    The schedule used in The Oncologist paper might be modified for every 3 week taxotere — one would take it for the seven days and then repeat the cycle when the next dose of taxotere is given. For weekly taxotere, 7 days would be continuous glutamine, so perhaps a shorter schedule of 3-4 days would suffice as used in some of the studies Aishman documents below.

    One last item from this paper is that the two arms had the same response to chemotherapy and survival was the same indicating that glutamine did not stimulate cancer growth.

    Aishman’s original text.

    I began to experience peripheral neuropathy following the first Taxotere infusion, notwithstanding 20 mg of Decadron IV as pre-medication. Paresthesia (burning, tingling) in my legs/feet and hands began about 6 hours after infusion and escalated with each treatment. I asked my medical oncologist and urologist about drugs to lessen this toxicity and both said that there are none and if the patient cannot tolerate it, the condition becomes dose- or treatment-limiting.

    However, after I was suffering from deep nail neuropathy, a fellow PCa patient told me about glutamine as a protectant against chemotherapy toxicities. Glutamine is a neutral gluconeogenic amino acid that is vital in whole-body nitrogen metabolism and it is depleted by many traumas such as surgery, infections, and cancer. Replacement thereof is necessary for the body to function properly. Powdered glutamine is readily available in drug stores and health food stores. Its most common use is by body builders or athletes following a strenuous work-out.

    A significant body of peer-reviewed trials and reports exist detailing the chemoprotectant qualities of glutamine. Saverese, et al. (1) reported that up to 75% of Taxol patients experience myalgias (muscular pain) and arthralgias (joint pain) and that 10 g p.o. t.i.d. (orally, 3 X/day) is a cost-effective, nontoxic method of preventing/lessening these toxicities. Vahdat (2) reported that 10 g p.o. t.i.d. for 4 days started 24 hours after chemo infusion significantly reduced peripheral neuropathy, dysethesias (numbness) in fingers/toes, deterioration of gait, and paresthesais (burning, tingling) resulting from Taxol infusions. Fahr, et al. (3) reported that glutamine may decrease tumor growth by enhancing NK (natural killer) cells. Rouse K, et al. (4) reported that oral glutamine enhances the selectivity of antitumor drugs by protecting normal tissues and possibly sensitizing tumor cells to chemotherapy treatment related injury.

    (Note 1: added by Hansen: Bill Aishman feels that the “24 hours after chemo” statement doesn’t matter — his recommendation based on his own experience is to take it all the time when on chemotherapy(7 days/week) or more specifically “my feet are a mess and I definitely see a difference when I don’t take it).”

    (Note 2: glutamine is a white powder that doesn’t dissolve well. Stir well and use a cold to warm to hot liquid when mixing it. The decomposition temperature of glutamine is 185ºC — well above the boiling point of water(100ºC.) Thus, it would seem that glutamine is ok to mix with hot drinks. It has no taste of its own.)

    Klimberg, et al (5) reported that a tumor acts as a ‘glutamine trap’ depleting the host of glutamine and resulting in cachexia (weight loss); supplemental glutamine does not make tumors grow, but in fact results in decreased growth through stimulation of the immune system; and when given with chemotherapy, glutamine protects the host and increases the selectivity of therapy for the tumor. Anderson, et al (6) states that oral glutamine (as a mouthwash) is simple to use and increases the comfort of many patients at high risk of developing stomatitis (mouth sores) as a result of intensive cancer chemotherapy. Miller (7) reported that the use of glutamine seems to prevent gut and oral toxic side-effects, and may increase the effectiveness of some chemotherapy drugs. Myers CE (8) states that the body’s need for glutamine can increase dramatically following injury, infection, or the progression of cancer and in these cases, the need for glutamine can exceed the ability of the body to supply it; glutamine is one of the major energy sources needed for the gastrointestinal tract cells to recover from chemotherapy; a glutamine mouthwash 2 X/day will dramatically lessen stomatitis (mouth sores) in patients on chemotherapy; glutamine plays a critical role in the body’s ability to defend itself against cancer.

    In summary, significant benefits are claimed in medical literature for glutamine supplementation during chemotherapy (and during radiation): a.) it provides the necessary energy-producing amino acid to replace that which is lost during chemotherapy, b.) it minimizes chemotherapy side effects, including neuropathy, arthralgia (joint pain), myalgia (muscular pain), paresthesias (burning, tingling sensations), dysethesias (impairment of sensation), and stomatitis (mouth sores); by eliminating or lessening these side effects, it is possible to extend the duration or dose of chemotherapy to induce apoptosis (cell death), c.) it prevents cachexia (weight loss), and d.) it enhances the immune system to produce natural killer (NK) cells, thus suppressing tumor growth.

    If one collectively considers these benefits it is reasonable to assume that there is a strong potential for increased survival as a result of glutamine supplementation during chemotherapy (or radiation).

    However, two reports (9) state that since tumors require glutamine, providing dietary glutamine may stimulate growth in some tumors. Myers (8) addresses this issue by stating that while glutamine is needed for tumor growth, it also plays a critical role in the ability of our body to defend itself against cancer. Myers continues with a caution to not treat yourself with glutamine without first discussing this in detail with your doctor.

    Obviously, I am taking oral glutamine now and intend to notify my medical oncologist that I will be taking 10 g X 4/day during any renewed chemotherapy treatments, since there appears to be no side-effects. Glutamine is most effective in powder form; it is odorless and tasteless and should be mixed with a cool drink, as hot drinks lessen the effectiveness. A discussion of glutamine (and other amino acids), suggested dosing schedules, and suggested support additives thereto can be found in a book by Sahley, et al. (10).

    At the suggestion of a PCa friend I also searched another chemo-protectant that seems to be very effective. I found 22 trials and reports detailing the efficacy of Amifostine (Ethyol) to relieve most toxicities from cancer chemotherapy. But after searching and briefing the 22 reports, I retrieved the specification sheets regarding the drug and decided that I definitely prefer glutamine as my chemo-protectant. Amifostine is infused immediately before chemotherapy, but you must have 2 pre-medicines to protect from the protectant; you must be laying down (supine position) and your vital signs are checked every 5 minutes; it can cause severe nausea and vomiting; systolic blood pressure may decrease significantly and the infusion must be stopped; you must drink sufficient liquids because amifostine causes severe dehydration; you may experience hypocalcemia (burning, tingling, muscle cramps) during infusion, dizziness, flushing, and/or hiccups.

    While amifostine seems to be effective in eliminating/reducing chemo-toxicity, this solution seems worse than the effects of chemotherapy toxicities and I prefer glutamine (simple to use, with no reported side-effects) as my chemo-protectant.

    (Note by Hansen on 2/9/05): Since Aishman wrote the above, oncologists have developed ways of giving Ethyol safely — by using lower doses and very short infusion times. For example, here is one patients anecdotal report on his use of Ethyol at the end of his chemotherapy: “I have taken Ethyol(amifostine) 500 mg IV at the conclusion of my chemo for PN , primarily at my toes bilaterally. I experienced no side effects and had a marked improvement in the PN almost immediately which has remained static.”)

    Copyright © 2002 Bill Aishman

    NOTE: I am not a doctor and can not give medical advice. I am not a medical researcher. I am a prostate cancer patient and I performed this layman’s analysis for my own decision-making purposes. In conjunction with a medical team, every cancer patient must make their own decisions regarding treatment options. I make no claim that this analysis is definitive or complete. Every HRPC patient should thoroughly review the Life Extension Foundation’s web site http://www.lef.org Prostate Cancer-Late Stage. I invite any and all additive contributions to my analysis that will provide patients a framework which will enhance their ability to make informed decisions regarding the use of chemotherapy protocols in their struggle with prostate cancer.

    References.

    (1) Saverese D, et al: Glutamine Treatment of Paclitaxel-Induced Myalgias and Arthralgias. J Clin Oncol;Vol 16,No 12:3918-19, 1998.

    (2) Vadhat L: Reduction of Paclitaxel-Induced Peripheral Neuropathy With Glutamine. Chemotherapy Foundation Symposium XVII;Nov 8-11, 2000, abstract 41.

    (3) Fahr MJ, et al.: Glutamine enhances immunoregulation of tumor growth. JPEN J Parenter Entral Nutr 1994 Nov-Dec;18(6):471-6.

    (4) Rouse K, et al.: Glutamine enhances selectivity of chemotherapy through chenges in glutathione metabolism. Ann Surg 1995 Apr;22(4):420-6.

    (5) Klimberg VS, et al.: Glutamine, Cancer, and its Therapy. Am J Surg 1996 nov;172(5):418-24.

    (6) Anderson PM, et al.: Oral glutamine reduces the duration and severity of stomatitis after cytotoxic cancer chemotherapy. Cancer 1998 Oct 1:83(7):1433-9.

    (7) Miller AL: Therapeutic considerations of L-glutamine: a review of the literature. Altern Med Rev 1999 Aug;4(4):239-48.

    (8) Myers CE: Prostate Forum, March 2000;Vol 5, No 34.

    (9) Altern Med Rev 1999;4:239-48; and J Surg Res 1990;48:319-23.

    (10) Billie J Staley, Ph.D. , et al, Heal with Amino Acids and Nutrients.

  9. jana says:

    For your convenience, here is another copy of the info about glutamine that I left in a previous comment about a month ago (before you started taking the Xeloda):
    “Hi Susan,
    Bravo on your BlogHer trip/ presentation.
    My Mom took Xeloda for a year. First thing you should know: Yes, the list of potential side effects will sound daunting, but (at least for my Mom) it actually turned out to be really very tolerable. None of the dreadful stuff on the list happened to her. BUT in case no one has told you this yet — this is IMPORTANT, a MUST-do: Per a pharmacist at the nation’s top-ranked cancer center (MD Anderson at the University of Texas in Houston): you should take “glutamine” EVERY day when you are on Xeloda (or other chemo). That’s an amino acid that will help to replenish/ rebuild the mucous membranes and intestinal tract tissue that gets whammied by chemo. If memory serves, it’s the most common amino acid in the human body. (As you probably already know, chemo is effective against cancer cells because chemo zaps fast-dividing cells, and cancer cells are of course fast-dividing cells — but unfortunately, your normal healthy mucous membrane and intestinal tract cells are also fast-dividing cells, which is why Xeloda can trigger diarrhea and mouth-sores, etc. But my Mom was diligent about taking the glutamine every day, and lo and behold, she NEVER got the diarrhea that is supposedly common with Xeloda. Get “pharmaceutical-grade” glutamine — it comes as a powder in a jar, and when you are on chemo you should take from 16 to 30 grams a day (depending on which source is talking). It’s very simple, you just drop a few scoops of the flavorless white powder into a glass of water (or other liquid), stir it up and drink it, several times a day. (Actually, they say it’s best to first swish it around in your mouth like a mouthwash, to help prevent mouthsores, before you swallow it.) Don’t worry, it doesn’t taste bitter or bad — no taste at all. Jarrow is a reputable brand (availble through http://www.iHerb.com or LuckyVitamin.com, etc. for about half the price you would pay in a store.) Jarrow is the one that my Mom used with Xeloda. This is the sort of thing that your top-notch oncologist will probably forget to tell you (as my Mom’s did), but when you do a search about glutamine online, or if you ask your oncologist about it, you will find that it is legit — and enormously helpful. Essential if you are on chemo. Best wishes.
    “Also: In a previous comment, I mentioned taking “two scoops” of glutamine at a time (2 scoops = 4mg), several times a day (in order to prevent/ alleviate chemo side effects) — but I should add that I have read that you could also take 10 mg three times a day (with no side effects)… all that matters is that it add up to (ideally) 30mg total for the day (the amount that was used in studies). You will be on the maximum dose of Xeloda, so it would be wise to aim for the 30 grams of glutamine daily, instead of only 16 grams. Studies have shown that glutamine can also help to prevent/ mitigate chemo-induced neuropathy (which is also a potential issue with Xeloda), so it really is important that you start taking glutatmine as soon as you start the Xeloda — and keep taking it every day, EVEN DURING YOUR DAYS OFF of the chemo, to help replenish/ rebuild your tissues. As I mentioned, this is a according to many reputable sources. Just passing along lessons learned, to hopefully help you avoid/ alleviate side effects (and thereby avert/minimize chemo dose reductions and/or interruptions), so that you can get the maximum benefit from the chemo. Good luck!”

  10. Susan, I’m so sorry the second cycle hasn’t been as kind as the first – but glad to hear that you’re staying positive and accepting all the help that your friends are so anxious to give. Chemo does suck and we all hate it with you! But it will be worth it, so so very worth it all. Lots of love and hugs to you.

  11. JoC says:

    (((((((((hugs)))))))))))))) and warm fuzzies. I want to salute you for calling uncle as you called it.
    Accepting help can be really hard. You actually called to request help at least 100x harder. You may feel physically weak but you are incredibly strong!

  12. NYFriend says:

    Such a bummer that Cycle 2 is so hard. I am still AMAZED at how much you are doing despite it all. You totally rock. Congrats on the article!

    Big hugs, hope you are feeling better

  13. […] of my gut were affected.  The fourth week, it hit me hard and I was doing too much and I needed to stop and rest.  After I did, things got much better and I’m up and around and doing everything just like I […]

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