Starting Chemo June 2013!?!?!
Comments
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I also have ear pain in my right ear. Hip, bone and joint pain is common for me as well. Taxol is not without its side effects and the oncs just want to administer drugs, not treat patients. I get more assistance from the infusion nurses than my doctor that I haven't seen for a month. Ridiculous how little they know. They just run you through the drug mill to collect their $5k per visit!
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I've also noticed the hearing difficulties too. I've had to ask people to repeat themselves more than once. I also noticed that my vision gets a little blurry at times. People, like that nurse, forget we are getting chemicals that kill ALL cells..good ones and bad ones..pumped into our bodies. We need those good cells to be healthy, normal people. Any medical professional that thinks by wiping out the major part of our bodies used for circulating oxygen, fighting infections, etc. shouldn't have a huge influence on how we feel is either ignorant or insensitive. I guess sometimes we need to educate them...bring in info on the side effects of your chemo and let the nurse know so she can do her job better.
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Annika,
I have had left chest pain after (and ever since) my first chemo treatment. I had a full cardiac work up as well as regular MUGA scans---all is well. Since we have the same treatment plan, I hope yours chest pain is not cardiac related either and just another SE that will go away when we finish chemo/Herceptin. My final TCH is Friday! I simply cannot wait to be done with this part.
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Wow I found I have some hearing loss also. Hips, joints even my ribs hurt today .. At least the fever is gone.. On the road to recovery 😄
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Last chemo today, then into the "what next" basket, onco told me yesterday they will do 3 monthly checkups so I'm happy about that, and happy to start growing some hair back hopefully in time for our summer.
Next phase will be to start looking into my diet and exercise when these sore bones and muscles allow it and to figure out who I am now, I've grown so intollerant to some people's mundane problems - not problem problems but people that stress over absolute crap, I reckon I'm just so exhausted after this year it's turned me into super bitch!
But hey, haven't we all done so great, we're still here living and breathing and helping eachother through what can be a bloody nightmare, joining this site and group has been such a huge help so just want to say thanks to everyone on here, reading all the posts certainly helps you with your own journey (good or bad), knowing your not alone and then post chemo - I know it'll be just as helpful!
Big loves people, and fingers crossed "team NZ" win the cup this morning!!
xox
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I've lucked out. I have 3 awesome oncologists that take lots of time with me before each infusion. They answer questions, tell me what to expect and make sure I'm tolerating everything well. And the infusion nurses have been great too. I told the nurse today I was a little nervous about not have my chemo safety net and she said it was normal. People like to be proactive and "fix" things. When we're done with chemo and rads we feel less proactive and therefore less in control. Made sense to me.
I've been really tired already with this round. I suppose when the ativan and benedryl wear off the steroids will kick in and I'll be zooming. I'm anemic too. Who knew? He didn't mention suppliments. What are the symptoms? My ears alternate hurting, I have the breathing thing (and I'm far from sedentary with three kids in hockey!). It's Taxol.
I have loved this site too! I've learned more here than from anywhere else plus the comfort of having others in the same boat with me.
I go to the radiologist next week. I want to get through that now too. Mostly I want my hair to grow back as fast as it fell out.
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I also have a great oncologist and my NP is wonderful too!!! I have had 2 muga scans so far so my heart is ok (for now). My lungs sounds good so I got my infusion, now high on steroids I feel pretty good
Im gonna boost my anti inflammatory foods to see if I can make my pain better....also gonna try some anti acid pills!!!! 7 more to go I also had my genetic testing today....praying for neg. BRCA!!! -
Does anyone have neuropthy because my toes and thumbs hurt all the time. Ive have an right ear issue since first chemo and the Np said she didn't no why!!!!!! Does neuropthy go away or is it forever. How do love the people who tell things you really don't want to know? Like neuropthy is forever. Or the ones who tell you about people they know died from Breast cancer!!! Cant stand it.... Well ladies have a great day...
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Neuropothy can if it gets to bad last forever that's why they should help you keep it under control. And yes it can be pain not tingly and numb. My np told me to keep up on vitamin b6 and gentle massage with good hand lotion. Also I could dip them in lukewarm vinager and water?? My hand hurt bad on day 3-4 after chemo...like I slammed them in the wall or a cardoor but I was told as long as its tolerable and I have full use of hand they won't lower my chemo dose or give meds fir it!! I also love (not) how people have to tell you all the cancer deaths they know of.....kinda like when you're pregnant they have to give you horror delivery stories
Time to get all weekly shores done...Im on a steroid high..... -
Ladies,
I take Glutamine powder in cold food every day for neuropathy and it helps immensely. Just put a heaping tablespoon in a smoothie or some yogurt every morning. I've had some twinges of tingling here and there but that's it. Only lasts for a moment or two. Any longer than that I'd go nuts. Thinking about switching oncology groups. Really unhappy with mine... Sigh. -
Oh yes I do the glutamine too.....mine is pill form..HUGE pills I should switch !!
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dlm - I put L-Glutamine powder in a glass of juice every morning. Sometimes a glass in the evening too. If I forget I can really feel the neuropathy. And I take a lot of vitamin B. So far so good but the L-Glutamine powder is a must!
I'm feeling a little nauseated with this round. First time with Taxol but onc said this would be the worst round and I know round 4 of AC was a nightmare. I'm on the steroid "high" and almost wonder if that's whats making me sick. May have to take a pill for that. I told my husband I feel like "Alice" - some pills make you tall, some pills make you small. I used to hardly ever take pills. Now? Better living through chemistry. I always do a little celebration dance when I make it through the day without meds. Hopefully more and more.
Hang in there ladies!
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Kati,
I was so sick after the first round of Taxol I almost didn't make it out of the chair. Round 2 was better with very little nausea. Took Ativan on the first night and that was it.
Right now I just want to stop everything. I hate chemo, I hate my oncologists, don't want rads... I wish there was some sense of comfort that it was actually doing something other than killing my body. If chemo doesn't kill stem cells, then what's the point? I feel like they are just running a drug mill and cashing in from the insurance company.... I hate days like this. At least I'm off to the PS for a TE fill. That should be oh so much fun! -
So I've decided to stop treatment. I can't handle the destruction of my healthy cells any longer. I'm meeting with my regular doc to discuss alternatives and to schedule a CT scan to see if there is any cancer evident. After all my research I've concluded I'm doing more harm than good. I am going to take curcumin still, maybe bromelain, and will be going vegetarian. I'll keep you posted on any alternatives my ND comes up with. I feel good about this and am doing what I think is best for me. I wish you all luck!
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Dvygrl how many treatments did you do? Don't worry because I refused on AC myself you know your body best. I'm on tamoxifen tor 5 days no se think about that its more important than chemo...Hang in there I felt the same way about my onc to...
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Dlm,
I did 4 rounds AC and 2 of Taxol. I've had enough. When I wake up I get a pounding headache on the left side of my head every morning. I have a hard time doing anything without being winded. Everything feels broken and damaged. And they can't even tell me if there is any cancer in my body. It doesn't make sense to do this. I won't be doing the hormone therapy either because I will be having a total hysterectomy due to some uterine issues so that solves the estrogen problem. Did you need your brain requires estrogen for quick thinking? Explains the brain fog... Will keep it natural unless I have a reason to do something more drastic. -
Dyvgrl - I have my daily doubts as well but I've made it through to the end. You were doing 12 doses of Taxol right? I had 4 DD. I'm glad I'm done. Having good oncologists makes a difference. I'm sorry that didn't work in your favor. It is amazing how much they jab the insurance companies for! And if you don't have good insurance do you just face death? ugh!
I've heard a lot about curcumin but I'm not taking it. I've considered taking it now that chemo is over. Anybody know if that still works? Or is it too little too late? From what I read it's supposed to be taken with chemo - I didn't know.
I'm very weak with this last round. The nausea has left me but I need to spend a lot of time in the horizontal position.
I go in next week to discuss rads and yes, I will be taking 5 years of meds. Not sure yet which one. I have a 9 year old - I have to feel I did everything I possibly could to live as long as I possibly can so as to see him grown. Like age 30 at least. I owe him that much. I also have an 11 year old and a 16 year old. I want to dance at their weddings.
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Kati,
I take curcumin now because it is known to kill cancer stem cells. They recommend it during chemo because it basically ensures that the cells die completely during chemo since it doesn't kill the stem cell, so like a double whammy. But curcumin is still effective at killing stem cells regardless so it will help to take it. I will be going to my ND to get other supplements that also have anti cancer properties. I know eating broccoli is big on the list, and bromelain, but not sure if that is a supplement. It's tough making the right decisions for us, everyone has their own path to follow since no one can give us a cure at this point. Still praying for that!! -
Look into a seminar across the nation on oct 5th through Maximized Living on killing cancer or never getting it in the first place !!! Just found out a friend of mine I haven't talked to in a while is teaching it here in Mi. Talked to her a long time today, I am going to finish my treatment (if my health allows) but I want to live a long long time and this body has allready proven to me it knows how to make cancer or not take care of cells so I want to do everything possible to fix it and support my body !!!
Good Luck Dyvgrl and please check in with us
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Hi everyone,
To those of you finishing chemo
woo hoo.. !!!!!
Am almost 8 weeks post.. Hard to believe. Was feeling good, but got a bug from my kids and have taken ages recovering. So, try to stay away from sick kids and germs etc. has been hard.
Dyvgirl, good luck with your next step, I now take a few supplements, circumin, dim, green tea, vit d, and have been reading lots, there is a lot out there.. The trials on metformin are interesting,. have you seen those..? And melatonin too.. I now spend my morning coffee downing pills.. Oh well..
Tamox has been ok, had crap sleep initially but it's settled down now. So far so good.. Appetite has been reduced which is good..:)
Take care everyone.. -
I read this book called "Anticancer". It was written by a physician who found out through a fluke he had brain cancer. He did all this research and found out some interesting things. Here are the most important things I took from the book:
1. Exercise like walking for 30 minutes a day six days a week significantly reduces recurrence rates in breast cancer patients.
2. Drinking 3 cups of green tea (not 2 or 1) a day also prevents recurrence according to studies.
3. Tumeric mixed with black pepper (aka curcumin) is highly beneficial. The black pepper makes your body absorb the Tumeric and is necessary. I have been taking curcumin pills since finishing chemo. If you buy curcumin, make sure is has Bioprene which is a pepper extract for bioavailability.
4. Limit refined white sugar, meat and white flour. Eat more veggies and limit meat to 3 times a week.
The author claims the point of all of the above is to change the climate of your body to make it inhospitable to cancer cells. There were some strange parts of the book but overall, I found it informative and helpful.
Many of the chapters also deal with having good support and a positive attitude.
I feel like I just wrote a book report!
My ONC also sent me a book entitled "After Breast Cancer" by Hester Hill Schnipper. I have not finished it but so far, she has been pretty accurate. For instance, I had just told my hubby that I felt abandoned by my ONC because I haven't heard from her. The book says that is totally normal. Who knew? -
Dvygrl good for you be your own advocate. I truly believe we know our bodies better than the doctors. Two great books FOOD MATTERS and Knockout by Suzanne Sommers. Try to intake vitamins from food not supplements. When will they treat the person and not the disease!!!! Stay positive is key!!!' And that I am this shit is not going to take me down I'm stronger than that!!!!! Even though my immune system betrayed me I will get that back too...And Dvygrl I refused the last AC because I told the onc I rather die than put that in my body again and he said ok that's enough for you!! Good luck and stay strong as we are!!!!!
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Thanks everyone for all the tips. I'm going to the book store today and will get some reading done. I've been getting a lot of info about anticancer foods and the more I read the better I feel about my decision. I honestly feel thy just want to maximize the dollar amount they can rob from the insurance companies without killing is first. Never mind treating the patient. I know too many people who did everything right and ended up with secondary cancer later. I'm going to follow my heart and do something different. I'm also saying a TON of prayers not just for me but for all of us. Also trying to figure out if there is CBD in raw hemp seed. Anyone have any info on that by chance?
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I am not sure. There is a thread here about CBD oil and links on how to make it. It seems complicated. Here is the link:
http://community.breastcancer.org/topic_post?forum_id=79&id=797274&page=1 -
There is a Canadian company that sells hemp seed can't remember the name but can check Monday when Im back at work
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Hello ladies!
I am joining a little late but here I am... I will start tomorrow the 12 sessions of taxol and hope it will be ok... I actually managed very good the first 4 (1 every 3 weeks), although the third and 4th had a 1 week delay because of low count of neutro...something...
Regarding hemp seed, where I live is easy to get so from my second session I have been using and it did make a difference + homeopathy. I do take curcumin as well as you are commenting.
The worst part in fact, as Ingrid posted as well, was a cold I got August 30. It is taking me ages to recover completely. You could say I am fine already but I am still coughing! Soooo frustrating... Talking about frustration... that is the worst part... it makes me angry and does not help to keep going..
Glad I found you and I will finish tomorrow to read all your posts!!!!
Good night!
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Good morning ladies as another work.week starts. I had a good weekend not great but good. When does the hair stop falling out.. it will be 3 weeks Thursday and my hair is till coming out not growing g in. So frustrating!!! Hope everyone feels good Enjoy the beautiful weather this week on the east coast. New York is having a warm full 80s this week
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What are hemp seeds and curcumin
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My hair started growing like crazy with taxol.....week 5 it ALL fell out and I noticed this morning (week6 tomorrow) I have an even peachfuzz covering my top
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Hi there! Congrats on all who are done with chemo!!!I cannot believe I started topic this back in May!!!!i am done with chemo and had a lumpectomy. i have tested positive for the gene and have decided to go ahead with a double mastectomy. I am a canditate for immediate reconstruction, direct to impalnt. I am currently a B and would have liked to go a LITTLE bigger, but not sure if it is worth th extra surgery~ My PO did explain that with direct to implant, i may have to have a shaping surgery anyway. Anyone help?
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