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Taxotere, Carboplatin and Herceptin

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  • gk2bc0
    gk2bc0 Member Posts: 18
    edited July 2008

    Hello Ladies - I had my first of 6 rounds of TCH yesterday with Herceptin on the off weeks and then following 21 days after all the rounds of TCH are finished.  I am feeling good today. Since I am expecting to return to work on Monday (day five of 1tx) should I expect to that day to be a "bad" day? I had a mastectomy with immediate TRAM recon on June 2, so i am pretty much recovered from that.  I thought after I got through the first treatment I would be less anxious, but that may take a whole cycle before I can relax a bit. I am feeling somewhat jittery, possibly the result of the dexamethasone?  Sure wish i wasn't a part of this group, but glad you are all here!  Gail

  • shelbaroni
    shelbaroni Member Posts: 350
    edited July 2008

    Welcome, Gail. I am typically the upbeat, funny one, but not today. I am so angry that I punched the wall in my studio today. I had tx #3 yesterday. Even an hour-long bike ride along the bay and a yoga class didn't fix the anger. I'm probably steroid-ed out. I'm either euphoric/creative or homicidal on steroids. It may manifest in "jittery" for you. I'm a little more object-oriented and either want to make things or break things. People differ in their "bad" days. Mine have been day 5. Both of my prior "Day 5's", I've been in bed. And believe me, I am not a bed type of person. But this is your discovery round. You might want to keep a daily journal or notes about what side effects hit on what day. Your body may respond similarly on future cycles...sorta like your period, but worse. As for me, I didn't have the TRAM. I had the latissumus flap. Mine was March 26. I pretty much have my back and arm strength back on that side (though I haven't tried kayaking yet). I just get stiff up the right side sometimes, but usually yoga or a massage will fix it. And Gail--welcome to Camp Chemo, the only camp where EVERYBODY wants to GO HOME! But there are some really nice people here. I'm even nice sometimes, but don't tell anybody.

  • bethanybeane
    bethanybeane Member Posts: 167
    edited July 2008

    Hi Gail,

    Jittery yes from steroids and it will pass -- I was afraid I was going to be that way for the rest of my life....

    Shelbaroni -- great point about the journal -- I'm going to rely on those notes that I took during the stupor of Treatment #1 --  written in a complete fog but actually kinda make sense.

    Thanks for the warning about the anger -- it's no wonder and fully justifiable -- I've been very weepy today. I guess b/c I know Monday I'll be facing a week of feeling bad but also b/c my hair is beginning to fall out..

    Planning on having the most lovely weekend possible and taking Prilosec and Miralax in preparation for TX #1.

     Hope we all hang in there together. B

  • punita
    punita Member Posts: 9
    edited July 2008

    yes, kristyann you are correct ; my mother had steroids at the time she was taking chemo ...

  • shelbaroni
    shelbaroni Member Posts: 350
    edited July 2008
    THIS JUST IN! I have found THE ANSWER (at least for me) for the problem of post-chemo constipation. And I'm a person that it took a combo of stool softeners, senna tea, and Miralax 5 days to work for. And this time I'm on day three and, well, eliminating like a goose. Are you READY? OK...here it is. Go to www.marilynfarms.com (which is a store that handles natural food supplements and herbal remedies) and click on "cleanse products". You will see a product called "Colon Cleanse": $18.95 for 100 capsules. It's entirely herbal: main ingredients are things like aloe, ginger, senna, habanero peppers (I wouldn't take a whole lot of them on an empty stomach, but they don't burn if you drink plenty of water with them). But these work. And it's not like the chemical stuff with a lot of cramping. Try them--you'll like them. And this store has a lot of other good stuff too, and check out some of their articles. I know these people personally. They're good folks.

    Hopefully everyone's doing the best possible today. I'm off the steroids, and Mr. Hyde has gone away. Fortunately I didn't assault anyone with deadly weapons or drive off the Coronado Bay Bridge yesterday. The thing I hate, though, about the day after steroids is the crash. I feel like I'm swimming through Jello that's starting to set up. I would just go to bed and take drugs, except that I have an appointment with my counselor this afternoon.

    Aly: How have you been? I've been wondering...searching for your little spirit out there in the ether. I relayed your port catastrophe to my nurse on Thursday during my infusion, and she winced. Said she'd never heard of anything like that before. I pray that you're done having strange things happen to you.

    By the way--anyone who gets swelling (edema) after infusions: lymphatic massage does work. I had heard that it does and I tried it yesterday. Two pounds of water gone this morning! And no more fat legs. It does wonders for post-surgical pain and tightness as well. 
  • AlyMarie
    AlyMarie Member Posts: 192
    edited July 2008

    Hi Shel.  I'm here.  Thanks for thinking of me.  I've just been working on getting rid of this terrible head cold that beat me all to hell last week.  Feeling much better today, although still tired.  My blood has finally started to thin so I had my last shot in the belly last night (yaaay!!). I go in again Monday to have my clotting time checked and hopefully it will be spot on.  You should see my tummy, it's one big bruise.  Not so sure why I had to be one of the unusual ones to get a clot.  Just my luck I suppose.  Hmmmm, what other rare and unusual side effects are out there for me to get next?? :o)

    I'm looking forward to hopefully having a full week of not feeling like crap before I go in for tx #3 a week from Monday.  I'm also hoping that this round will see me only having to deal with the chemo side effects and not a whole bunch of extraneous CRAP like blood clots and head colds.  One thing at a time please!!!!

  • cupcake7
    cupcake7 Member Posts: 321
    edited July 2008

    I have not been on for 9 days because I have been in the hospital.  Remember the question on the back up?  Well I ended up blowing a bowel trying to go.  Such pain!!!  They had to do an emergency colostomy.  I'm not happy but it can be reversed after the chemo  cause it is a big surgery to reconnect.  Right now with all the chemo in and the WBC at a 2 along with everything else my body is struggling to recoop.  I have an infection so they took out the staples and letting me heal from the inside out.  At this point they have to stop the chemo until my body heals.  With diabetes that is difficult too.  SO here I am with blisters in my mouth, weak from surgery or chemo, and on a holding pattern with my treatment. But through it all my Lord has been with me.  I was hoping they could at least use the Herception to keep the cancer at bay, but they said not.  I am tired to will close.  I just wanted my fellow campers to know what happened to me.  Hugs...Brenda

  • bethanybeane
    bethanybeane Member Posts: 167
    edited July 2008

    Dear Brenda and AlyMarie,

    I am really so sorry to hear of your pain and struggles. My thoughts and prayers are with both of you.

    Bethany

  • AlyMarie
    AlyMarie Member Posts: 192
    edited July 2008

    Please, no worries for me.  I am fine.  All prayers for Brenda, she needs them.

    Brenda I hardly know what to say I feel so desperately sorry for you and what you are going through!  I wish I could give you a hug but the best I can do is say that I will pray for you and that I hope your recovery is a speedy one.  God is good.

    Love to you,

    Alyson

  • suemed8749
    suemed8749 Member Posts: 210
    edited July 2008

    Brenda: I am so sorry to hear about your emergency surgery. Like Aly, I don't know what to say except to let you know that you're in my prayers.

    Love to you - Sue

  • Donalee
    Donalee Member Posts: 106
    edited July 2008

    Brenda,

    WOW! I feel so bad for you! Try and keep your spirits up. I can't imagine the pain you must be in! I'm praying for you too! I'm glad you checked in you've got a lot of cheerleaders here!

    Love ya!

    Donalee

  • gramma23
    gramma23 Member Posts: 482
    edited July 2008

    I am sorry for your pain and problems Brenda. I hope all goes well from here on out. I am like you so tired but I have not even gotten much of start for the chemo. I have had 3 tx if you just count Herceptin.

  • Gina_M
    Gina_M Member Posts: 108
    edited July 2008

    Brenda,

    My thoughts and prayers are with you and your strong faith will be your support through these struggles.  We hopefully will all look back on this time in our lives and realize that we were being tested and we are strong!  Sometimes it's hard to belive that choosing chemo was a good choice, but in the long run, we know we are doing everything we can to not go through this again!

    Best of everything to you Brenda!

    Gina_M.

  • fltbanjo39
    fltbanjo39 Member Posts: 5
    edited July 2008

    Cupcake7 been so worried about you.  Hang in there. Our thoughts and prayers are with you.

  • jap
    jap Member Posts: 43
    edited July 2008

    Hi Bethany and others,

    Could you tell me what you take before a treatment -- how much Prilosec, Meralax?  Does anyone use zantac?

    Thanks,

    Jo Anne

  • shelbaroni
    shelbaroni Member Posts: 350
    edited July 2008
    Jo Anne;

    I don't know about the Zantac and Prilosec, because any acid tummy I have is manageable with Tums. But I recommend hitting the ground running with the bowel issues. This last treatment (my third) I have been the most successful starting with stool softeners THE DAY BEFORE starting on steroids. Then the night before treatment, I took not only the stool softener, but the herbal laxative I talked about on my previous entry that has aloe, senna, and habanero pepper. If that works well, continue. If not, my onco nurse says you can take more in 12 hours. You just have to treat it aggressively, before it happens.

    Cupcake:

    I'm sorry to be so late in reading about what happened to you. Talk about aggressive! I am aggressively praying for you, that no more stumbling blocks come between you and your treatment. Enough is enough! And I pray that your body, soul, and spirit can rest pain-free as the Lord provides the healing. Please continue to keep us posted.
  • cupcake7
    cupcake7 Member Posts: 321
    edited July 2008

    Thank you my dear friends:  Today is a smidge better than yesterday so hopefully each day will build on the next.  I just come in briefly, but your words of encouragement is so helpful.  I know without a doubt God is with me.  Some say like to job just to cruse God and get it over with, but my mouth with praise Him even through this.  The Lord gives and the Lord takes away, blessed be the name of the Lord.  One thought came to me this morning of how I dreaded the chemo, but today would be very happy if that is all I had to face.  I would now be coming out of the effects and starting to feel good.  So for all of you dear ones that is in chemo maybe my delima will give you hope that you can deal with yours a bit much better.  God bless and chat soon as I get better...Brenda

  • bethanybeane
    bethanybeane Member Posts: 167
    edited July 2008

    Hi JoAnne and TCH friends,

    For heartburn:

    With the advice/approval of the onc nurse, I decided to start the Prilosec on Friday before my Monday treatment (and tonight's Sunday night dexamethasone). And, I had been told by a good friend (nurse practitioner) and her husband (surgeon) that doubling the Prilolec OTC makes it act like prescription strength Nexium. So I will continue taking 2 capules 2xday throughout the week -- and then again every three weeks for that week starting out a couple of days ahead.

     For constipation:

    1. Probiotics (activia yogurt/cottage cheese first for a couple of weeks and building up now to 1 capsule of and ultimate 15 Billion Probiotic broad spectrum) -- There are lots of good brands and I chose this one: Primal Defense Ultra from Whole Foods. Eventually building up to 3 capsules/day.

    2. Saturday night I started taking CleanseMore Super Colon cleanse formula and will take it throughout days 1- 5 or six depending on the success (I have Miralax as back-up but I think it makes me crampy and these capsules don't seem to do that): They contain the following:

    Aloe gel/Rhubarb root/slippery elm bark/marshmallow root and Triphaia (which is supposed to be a good natural laxative)

    There's a big happy sun on the label and is made by RENEW LIFE. I couldn't find the Maryland Farms product at WF and didn't want to wait to order it....so hopefully I have the success that Shel did. If not, I'll order whatever it takes. 

    3. Drinking shots of Aloe Leaf juice before meals.

    4.There's also Sennekot if things slow down and the fiber and other stuff don't work. But your system can get dependent on that.... So we'll see.

    I was pretty miserable last time with bloating, knots and cramping but never nauseous. My infusion begins with 2 capsules of benadryl and a Kytril drip. (anti-emetic)

    I hope this helps you. Can't believe I'm saying this but am anyway: Happy pooping.:-) Bethany 

  • lynnmom1968
    lynnmom1968 Member Posts: 19
    edited July 2008

    Cupcake, I'm so sorry to hear what's happened.  I know you will stay strong and your faith will help you through.  We are all thinking of you and praying for you.

    You all were talking about weird side effects.  I have this eye twitch.  Only on one side.  It's very annoying.  And when I catch a glimpse of it in the mirror it looks a little disturbing.

     Shel, speaking of costumes.  We're planning our family Halloween trip to Disney.  We always go to the Not-So-Scary Halloween Party at the Magic Kingdom.  We don't usually dress up, but I said maybe I'll shave the baby's head and we can go as Dr. Evil (or whatever the bad guy from Austin Powers is named) and Minne Me.  Whaddya think?  You mentioned Coronado Bay Bridge.  Do you live near Coronado island?  I attended a conference at the Hotel Del Coronado on the island a few years ago.  It was so beautiful there, I can't wait to go back.

    I'm on day 6 and it is so much better than last time.  All I can say is thank God for Ativan!  No more steroids after day 2, no crazy appetite, and I sleep like a baby!

    Lynn

  • KristyAnn
    KristyAnn Member Posts: 131
    edited July 2008

    Brenda,

     Praying for you! 

    Kristy
  • shelbaroni
    shelbaroni Member Posts: 350
    edited July 2008

    Lynn--Dr. Evil and Mini-Me would be awesome! And next weekend I'll post my photo as Aang the Last Airbender. I don't live in Coronado, but in Imperial Beach, just down the Silver Strand--the most southwesterly incorporated town in the US. Imperial Beach is where they filmed most of John From Cincinnati, the HBO series, that was on last summer.

  • azsunn
    azsunn Member Posts: 4
    edited July 2008

    Thoughts are with you Brenda!

  • Donalee
    Donalee Member Posts: 106
    edited July 2008

    I had an appointment the other day with, I guess, my Onc's nurse? Not sure!! She told me that I should not take any supplements because they would interfere with the effects of the chemo. All she said was that I could take a multi-vitamin. Has anyone else heard this? It seems like a lot of people here are taking supplements. I should have had her identify herself, but everyone, i guess assumed I knew who she was!!! Duhhhhh

  • Gina_M
    Gina_M Member Posts: 108
    edited July 2008

    Donalee, I too was told NO supplements at all - just multi-vitamin and calcium.  I think probably the reason is that no one has done any studies on how some of the "natural" supplements pharmacologically would interact with the chemo, whereas most of the prescription medication or standard medication (tylenol, motrin, colace, senekot, etc.) is tried and true over the years.  Also, there are no standards of production for "herbals" and other supplements, so one batch can vary considerably from another.  I avoid all herbals and other supplements, only taking a multi-vitamin and calcium daily (plus all the many prescription drugs to deal with every side effect under the sun!).

    Gina_M.

  • KristyAnn
    KristyAnn Member Posts: 131
    edited July 2008

    I was told the same thing- OK to take my chewable Flintstone and viactiv but to hold off anything else until after chemo. Ive heard the antioxidants and free radicals can interfere with how the chemo works.

    Kristy 

  • shelbaroni
    shelbaroni Member Posts: 350
    edited July 2008
    Oh wow. I'm on my bad day and can't stand up for any appreciable length of time, but I totally have to weigh in on this nutrition issue. I do not have a medical background myself, but throughout my cancer therapy, I have consulted with a Clinical Nutritionist with extensive experience supporting chemo patients. I also have a background in health education and, because I am married to a pharmaceutical chemist, the technical articles that I have trouble understanding can be "translated" for me. All of this is to say, if you have an enquiring mind, please consider what I have to say and, if you desire, take it back to your doctor.

    As it turns out, the whole question of whether or not to give nutritional supplements to cancer patients undergoing chemo or radiation is a HUGE controversy. Some of you have been exposed to the extreme "right-wing" AMA train of thought, that nourishing the host organism is tantamount to nourishing the tumor. While many oncologists think this way and probably always will, there are many who don't. For good reason. A book which presents the case of nutrition as an essential component of cancer therapy, written by Patrick Quillen, PhD, called Beating Cancer With Nutrition, is available on Amazon and breaks things down to a lay level of understanding while including many of the technical citations your doctor would be interested in.

    The main point made by Quillen which is pertinent to this argument is best summed up in these quote:

    (p.101) "Antioxidants have been shown to dramatially improve the tumor kill from pro-oxidative chemo and radiation, while protecting the host tissue from damage. Cancer cells are primarily anaerobic (meaning 'without oxygen') cells.... cancer cells do not absorb nor use antioxidants the same way that healthy aerobic cells do. ...Antioxidants protect healthy tissue, but leave the cancer cells more vulnerable to the damage from chemo or radiation."

    If you don't want to read the book but, at the same time, feel that you need some level of supplementation, I would recommend making a list of what you want to take and give it to your doctor. I think sometimes doctors tell us not to take anything, because they don't want to give us the license to take anything and everything. 

    So that's what I did. I made a list. On a daily basis, I take fish oil, black currant oil, flax oil,probiotics, fiber, a multiple vitamin/mineral, vitamin C, folic acid, concentrated broccoli sprout extract, calcium, magnesium, curcumin, and proflavanol. I used to take Coenzyme Q-10 as well. I gave the list to my oncologist (who has admitted that he's of the school of thought that I just have "expensive urine"), but the only one he's told me not to take is the Coenzyme Q-10. Quillen would disagree with him on that one, but I'm going with what my doctor says. I'll just beef up on that one after the chemo's over, because it might help protect my heart from the Herceptin:)

    Hopefully this helps somebody and doesn't just add to the confusion. I just couldn't go without putting in my 10 cents.
  • Gina_M
    Gina_M Member Posts: 108
    edited July 2008

    Shelbaroni - I am just hoping that I can have a good nutritional balance (through food that I ingest) without too many additions.  It is way too confusing to get into the debates, though I hope that more research is done into the supplements and their impacts on our health (with or without chemo considered).  I know that much of our food these days is not "pure" and that many of our ways of preparing food inactivate the nutrients, but I still can't help feeling that I'd rather go the more natural route if possible.  Pouring all these chemicals into my body currently has moved me so far off the map of natural/normal, that it willbe quite a while before I can really consider my future supplements.

    Gina_M.

  • bethanybeane
    bethanybeane Member Posts: 167
    edited July 2008

    Gina and Shel,

    Just came from the onc office and will just briefly add that although,her direction matches that of your doctor, Gina, when I told my Dr. of the probiotics and natural laxative ingredients she was ok with those -- hopefully, it's b/c these are just moving through the GI tract and not interfering with the chemo. I just want to keep from getting constipated. She did also recommend Sennekot-S if the stuff I mentioned above doesn't do the trick. But so far, it's really settled down the knottiness I've had for the last 3 weeks.

    I learned today that the anti-emetic I took by IV last time was Aloxi (not Kytril as I had thought). Nurse said the Aloxi works for 92 hours. So, that's a good thing to know about it would seem.

     Hope your mouth is better today, Gina. I still have all of my hair but Dr. said that once it happens with taxotere it's pretty sudden....we'll see. It may pop out tonight from the 2nd TX. Cheers, b

  • shelbaroni
    shelbaroni Member Posts: 350
    edited July 2008

    Just a little appendix to what I said before: To those doctors who say that we shouldn't use nutritional supplements because there are no strict guidelines on their manufacture, that is a false statement. The FDA issued a ruling effective August 2007 that manufacture, formulation, packaging and holding of nutritional supplements are subject to the same GMP (Good Manufacturing Practices) to which pharmaceuticals are subject. While such products have not gone through the clinical testing, since most clinical trials are bank-rolled by pharmaceutical companies, it does mean that there are standards of what is in the product and how much and consistency.

  • gramma23
    gramma23 Member Posts: 482
    edited July 2008

    Does anyone have a solution for mouth sores? I am going for another treatment tomorrow so I will ask about it. I have a bunch of the little rascals and not so little. I finally got some of my aloe vera plant this morning and it felt real good on my lips but then I decided to buy some so I did not use all my plant. It said all natural, not alcohol, not fragrance so I thought pure aloe like my plant. OMG that burned so bad I thought I was going to cry.I sure hope they can find something to help these sores. I lost another 5 pounds too. I am trying to eat but it hurts too bad. My husband got some Ensure and Boost which I have had 2 cans of. 1/2 at a time. the one this morning kept coming up on me. Am I the only one having diarrhea? I also have some moles in my genital area and they are swollen up and bleeding too.

    I need some advice on this stuff. Anyone else having the same problem? I am taking antibiotics and I am thinking that is part of my stomach problem.

    Carolyn

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