Cytoxan Taxotere Chemo Ladies- February/March 2013
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I'm going nuts. Would it not make sense to give us a list of what we can and cannot consume prior to starting chemo???
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Yes...it would have made more sense to give a little more info but I think when one initially hears that one is having chemo, all of the information can be so overwhelming. The information distributed to patients is not uniform and consistent and varies from doctor to doctor. Yes, I did have to rely on doing my own research to figure out how to take care of me while in chemoland. As for diet, I think the oncos are sometimes more concerned with a patient just getting food/nutrients in than what the food is. The infusion center where I had my chemo has an on staff dietitian to help patients. Although I never had a consult with her, she was available.
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Melrose - The majority of women on this board are investigative. We read and research everything. One of my surgeons mentioned that most of her patients don't research like I do. They just follow along like sheep, oblivious of the risks and dangers. Oh how I wish I were one of the women who could walk away from this believing I am cured. But instead I will watch the grapefruit in my fruit bowl rot.
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I hear you Warrior Woman! It is infuriating and annoying !!! I am an investigator as well and have looked everything up...it appears almost all things have been linked to cancer right? Since no one knows the cause it is hard to avoid eating/drinking things that could cause it..infuriating!!!
My MO also said something odd when I was in the other day, I had a long list of questions...one of them was drinking wine supposedly causes estrogen, so I asked should I avoid it altogether, he said when on Tamoxifen - it blocks the estrogen so drinking wine would be OK and the Tamoxifen would block it?? So assuming that Tamoxifen blocks all estrogen then we could eat/drink anything and be OK?? Or is he incorrect??? How to know??
I am suspicious of what I ate growing up to be the cause...my mother never cooked, we ate tv dinners or ate out at restaurants. What is in tv dinners? Who knows??
Melrose- Your links and info. are awesome and so helpful! You are so sweet to stay on these boards when you are done and help us all out! I'm sure it's therapeutic for you as well.
I am done with treatments but sure don't feel 'normal' or done yet at all...I am wondering when that will happen?
When I get the port out? When I get hair? or a little better each day....I am hopeful. I cannot have went through all of this for nothing...I am going to have JOY! HOPE! HAPPINESS! LOVE! AND A WONDERFUL LONG LIFE!
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Melrose & All Sisters, Thank you for so much response and information and discussion about OJ!!! Our pipes froze and we are without water and hoping they don't burst in outside wall. I am overwhelmed and being alert to the electric heaters that are on as we try to defrost pipes. We can't go to a hotel as we need to stay put & keep house safe. I am day 6 post chemo and awoke with some bone pain and flu like symptoms again, but I think it is Neulasta related. Thank goodness, it is all manageable today in light of this storm/pipes. I am telling you this because I have been so busy, I have not been following the posts that are in response to my concern!! I will say this: I agree, the women here are not sheep. We investigate. We ask questions. We are educated patients. I love it. I hope to return with a glass of water after having a shower. xoxo momat
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We are definitely not like sheep. I am sitting here at my PS waiting for a "refill". The right word escapes me right now. Hmm could that be chemo brain. Wearing a heart monitor for my rapid heart beat and noticing my right arm is swollen.... Damn lymphadema. When will this end!!!!!
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Audra- Here is a brief explanation from the BCO.org main website about Selective Estrogen Receptor Modulators which is what Tamox is. An easy way to understand how that Tamox works that it sits in the estrogen receptors in breast cells and prevents the estrogen from attaching to the cell. Imagine the breast cell like a lock and the Tamox is a key that fits into that lock.
Selective estrogen receptor modulators, called SERMs for short, block the effects of estrogen in the breast tissue. SERMs work by sitting in the estrogen receptors in breast cells. If a SERM is in the estrogen receptor, there is no room for estrogen and it can't attach to the cell. If estrogen isn't attached to a breast cell, the cell doesn't receive estrogen's signals to grow and multiply.
Cells in other tissues in the body, such as bones and the uterus, also have estrogen receptors. But each estrogen receptor has a slightly different structure, depending on the kind of cell it is in. So breast cell estrogen receptors are different from bone cell estrogen receptors and both of those estrogen receptors are different from uterine estrogen receptors. As their name says, SERMs are "selective" – this means that a SERM that blocks estrogen's action in breast cells can activate estrogen's action in other cells, such as bone, liver, and uterine cells.
As for where you are at post treatment.... I can tell you that it takes time to find yourself and find your way. There will be times of utter disbelief that you have physically been through what you have endured and then other times, you may look it in the most realistic way possible.... it is what it is. Now you have the wonderful task of taking care of yourself and being more aware of changes. As for the port, I had mine removed a month after my final Herceptin infusion by my breast surgeon who put it in. My "deportation" was by day surgery... checked in early morning at the hospital and I was home by 11:30 am. As for the hair, it does start making its appearance a few weeks post chemo. Of course, hair never grows back as quickly as one would like but to be able to feel that soft downy hair on one's head is so heavenly. I have been very lucky with my hair return; it came back evenly and a little wavy and in the same color as it was before it left. You will know when you are ready to emerge in public without a head covering or wig.
I haven't really made a habit of saying "new normal" because I just look at the situation the same as I did when I first heard those words.... sorry.... the pathology on what was removed doesn't look good. It is what it is. I have and continue to do my best to take care of myself, physically and emotionally and just keep loving myself, my family and friends. I know it sounds so very very simple.... the truth is that it is simple.
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Thank goodness we are intelligent women who are and have done our best to educate ourselves. I know that arming myself with knowledge and factual information helps me to stay calm and has allowed me to prepare myself emotionally and physically for things that come my way. I accepted the realities and limitations of things and just keep pushing forward. My onco and I have a very good relationship and will continue to work together to keep me healthy.
SchoolCounselor- Sorry to hear about the LE. Hope you are being seen by an LE therapist to help get that LE undercontrol You may want to check out the Step Up Speak Out website for some information http://www.stepup-speakout.org/ .
Momat927- Yikes on that cold weather!!!! Hope you feel better soon and your side effects are minimum!!!
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SC: Hope you get answers on the rapid hear rate.
Wishing minimal side effects to all in the BGC this week.
I am 8 weeks out and an sporting the GI Jane look. Exchange surgery is tomorrow. Yahoo!
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I was told no grapefruit or grapefruit juice with Tamoxifen for sure.....but never oranges or any other citrus fruit... I don't think I saved my fact sheet from my last prescription either, dang it. I know grapefruit is an issue with other meds as well (heart meds and some antidepressants).
Good luck tomorrow with your exchange KBeee. Please let us know how it goes. I have mine the end of March.
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Audre67-- port depends. My fired oncologist said 8 weeks from last chemo. The new one told me a year. I like the year since I don't bleed for blood work.
I meet with my new
oncologist today. She canceled chemo
today and reschedule for tomorrow. She
asked me what I knew about my cancer, how I came to this point in my life. We had a conversation. Imagine that a doctor
and patient talking. I told her Chemotherapy
was my darkness point in treatment and it took me while to make peace with it.
That is why I did so many genetic tests regarding chemotherapy. She even asked my husband question regarding my treatment. That was first for him.Then she told me why she
rescheduled my chemotherapy. Chemo #1 I
have been experience an anaphylactic allergic reaction to my chemo. She explained it is a life and death
situation with my throat swelling up and tongue and it is a miracle I have not
had a tracheotomy. I did tell here
Chemo1 and Chemo 2 I told my husband he might have to take me there, but I told
him in the same line I’m fighting it.I told her I’m a fighter
when it comes to having to take pills or go to the doctor. She wanted to let me make the choice on where
or not to finish the last chemo, because of the life or death situation now and
the fact I could have permanent throat damage.
She want to make sure whatever choice I make that I’m certain I would
have no regrets.My reply, “I was scared to
do chemotherapy, now I’m scared not to complete it. I have made my peace with
this journey in treatment and I feel I should finish it.” She will be giving me extra medicine tomorrow
and I could be getting two bags of Benadryl. One Benadryl before hand and then
one during the T: Taxotere® (docetaxel)treatment. Of course the throat doctor will be coming up
to visit me during the T treatment.I asked her the same
questions as my fired oncologist and she actually answered my questions and did
not try to push them off on other people.
She will support my decision on how I’m trying a new type of radiation,
so I don’t have to do 7 weeks of radiation, but she will not support me not
doing radiation, unless I do a mastectomy.
I have lots of decisions to make in the next four weeks. I’m looking forward to moving forward. I will also be getting Oophorectomy (ovary removal), because of Felix. Breast Cancer takes so much from a woman in
my case it won’t only take part or all of breast, but it will take my ovaries.As Breast Cancer takes from me and causes me
some side effects on my body, IT CAN NOT TAKE MY SPIRIT, MY FIGHT, and MY
PASSIONS in Life.Thank you for all your support. Last CHEMO IS TOMORROW!
Fight on!
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FDM, have you thought about doing just the C part of your TC? I understand you want to finish what you started, but if T is life threatening and you already did three treatments, isn't that enough? Sometimes three is better than four? Whatever you decide, you will be in my prayers.
Kbeee, yay! I am a week behind you. My exchange is next Friday the 31st. Let me know how it goes. Ate you feeling tired with Tamoxifen? My MO stopped it for one week because I was too tired and the pain in joints and one hand was too much.
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Warrior & all: About a definitive list of supplements &/or foods - again every doc is different & they have different ideas than the infusion nurses & those ideas are different than the vitamin store, and every patient is different and every reaction is different, etc, etc,. As an example, EVERYONE said not to drink sodas & do not drink caffeine since it's dehydrating. About the only liquid I could get down was Classic Coke. My MO said go for it. It was much more important to get down the liquid than to worry about the detrimental effects. Also when I asked about alcohol, he said probably not a good idea on the infusion day itself, although he knew 2 MDs who were in treatment and drank after every chemo day. Otherwise he believes in moderation - not too much & not too little - whether we're talking about food or drink or exercise or sleep.
Yes, most of the women on these threads want to research & learn. But remember, we're definitely in the minority. Most patients just want to do what the doc says and get it over. I have two neighbors who have finished BC treatment and don't even have a clue what was in their chemo cocktail - let alone what HER2+ means. Thanks heavens for everyone here who contributes their time & research & experience.
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FDM, So glad you found a good oncologist. Anaphylaxix is nothing to mess with. Glad the throat doctor will be there, but if you just do the C or ask abuot substitutung Abraxane which is lik ehte T but with different inactive ingredients (which I believe are the ones that cause the allergic reactions with Taxotere)...whatever you decide...congrats on your last chemo...hope your side effects are few, and that they subside quickly.
Headeast, My PS had me stop Tamixifen for 2 weeks before the surgery. I'd like to say my energy levels are up, but I worked about 50 hours last week and was up a lot at night (I am a firefighter/paramedic) so my extra energy was eaten up by my working too much! I'll have a nice nap tomorrow though, and will be off for a month on light duty after the surgery. I'll let you know how it goes. I am looking forward to losing the boulders on my chest and being squishy again.
My MO said grapefruits were not a problem. I have been eating 2 or 3 (or 4 or 5) a day!!!! It is one of the few things that tasted good after chemo (pomegranates being the other!!!), so I have just kept eating them. Hmmm...pharmacist said it was ok too and I just reread my perscription sheet on it which makes no mention of it. I will look more into it. I do not believe every article I read on the internet or none of us would eat anything, but I will look more into it since there are some meds that grapefruits can't be taken with.
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FDM -- You go girl!!!! As Headeast suggested! I only did the Cytoxan for my last infusion, due to the allergic reaction to Taxotere. It is a very individual decision, and I respect your wanting to finish it. Whatever you decide, it is important that it be right for you so that you have peace with the decision -- I felt like the risk was not worth the small benefit of that last T, and that is the right decision for me. We are all in your pockets, and will be happy dancin with you!
KBeee & Headeast -- you are closing in on the final steps here (other than the ongoing Tamoxifen). It much feel good to be seeing that light at the end of the tunnel.
Warrior & All -- I didn't have any food restrictions from my MO during chemo or with Tamoxifen, except no mushrooms during chemo. I have been eating oranges now and then, and during chemo I craved watermelon all the time -- juicy fruits tasted really good to me. I also ate lots of frozen yogurt, which hit the spot most of the time. Simple things without a lot of fat tasted best, so I stuck with that. Onc nurses told me that it is hard enough during chemo to find anything that you feel like eating, so this was not the time to put a bunch of parameters on food. I was told not to take any vitamins or supplements during chemo and for 4 weeks after, unless they were approved by MO. Now that chemo is done, I am back on vitamins and taking Tamoxifen....
Enjoying the comments about how we BCOers like to research and learn. MinusTwo, you are right, we are in the minority -- I find nurses and doctors like to have the intelligent conversation with a patient who works to learn about Dx and tx. But they seem to feel that is unusual, so I guess most patients must just go along with whatever. I am so glad to have found this site -- all of you have been such great sources of info.
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FDM - I too had a severe allergic reaction to taxotere - my onc refused to administer it to me a 4th time as she was certain I would go into anaphylactic shock... She gave me abraxane instead...so far I have not had a reaction tho my throat does feel a bit funny....hoping it's just a sore throat lol. Nice to know there are no more chemos ahead.......
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I think my doctors know better than to attempt to restrict my caffeine! That would be ugly.
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Just got back from my onco appointment. I asked about the citrus and the effect on the chemotherapy and the citrus and the Tamoxifen. She basically told me not to worry about it. With respect to the citrus and chemotherapy, she said it is possible that the citrus could affect the chemotherapy absorption but one needs to consider the amount of citrus one takes in. She didn't say how much is too much but I know that while I was having chemo, I think I didn't drink too much orange juice because of my mouth sores. As for the Tamoxifen and citrus, she said that I'm probably okay there since I don't eat citrus peel or citrus pith and don't eat orange marmelade, chicken with orange peel, etc. She has always said to me that I should eat things in moderation and not overload on just one kind of food. So since I got a clean report from her and from my mammo/US today, I'm just going to continue on my merry way.....
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FDM, hoping your chemo goes well! So glad you found an MO that is a better fit for you.
melrose, so happy that you got good reports!
kbee, thinking of you and hoping your surgery goes better than expected!!!
I am feeling much better today. I have to tell you ladies how much your support and encouragement mean to me. It is priceless. I would be so lost without this site right now.
((HUGS))
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FDM, thats awesome. I'm glad it is working out for you.
melrose, Hooray for good reports!
Kbee thinking of you. I will be there on the 21st. Got my last fill yesterday!
Keep, great to hear you are feeling better....hang in there.
Hugs everyone, I'm still reeling from the fact that I have lymphedema, I see the specialist tomorrow. Sigh. I made the mstake of googling it....oh dear!!!!
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LAST CHEMO! I even wrote a song for my chemo nurses. This is the first chemo that my throat didn't swell shut and tongue got swollen. The right oncologist and combination of Benadryl and steroids makes for a better experience. I'm not wanting to dance up and down, but we will see how tomorrow will be. I could actually talk and breathe today. My mouth still feels funny, but not as bad as the last three. I'm super exhausted, but feeling somewhat better. Thank you for all your support.
I hope those who are continuing on the journey that your SE get fewer. I hope you have someone who supports you and gives you the laughs.
SC I hope your lymphedema gets better. I know it sucks, but baby steps to progress.
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FDM, love it! Thanks for sharing!
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FairyDog, That is AWESOME!! Hooray for being DONE!
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fdm, I forgot to tell you Congratulations!
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love the pic fdm!!!! Congratulations!!!
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CONGRATS FDM!!!!! What a wonderful pic!!!
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FDM (AKA Marilyn) -- so glad it went better this time! Congratulations!!!!!!!!!!! Big hugs and pocket party for days!!!!
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fdm-
hooorrraayyyyy! you are so fun!
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FDM - YEAAAAA! Congratulations! Your good spirit must be such a nice change for the staff. It makes me feel like a jerk for all the moaning, groaning, whining and complaining that I do. Maybe next time I should start singing something.
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FDM, You rock! I just love your outfits. So happy that you've got your last chemo done. I hope you have no reactions nad that the side effects go away quickly.
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