September 2013 Chemo Group
Comments
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Art123-I just had weekly taxol number 4 on Thursday. I have not lost all my hair yet but it was shedding like crazy and driving me nuts. I had my husband cut it really short a couple of days ago so there would not be so much loose hair all over the place. What I have left is still shedding but I do still have pretty good coverage on my head. I have not lost hair yet anywhere else. I have heard that with taxol the hair loss is different. From reading other boards some women lost it all and a few just had a lot of thinning. My chemo nurse seemed surprised when I told her how much mine had already thinned, which is weird because my MO made a point of telling me that my hair would all fall out. -
Someone gave me a little book to read titled "There's no place like HOPE" A guide to beating cancer in mind-sized bites. by Vickie Girard. They are just inspiring little tidbits regarding many of the topics we all talk about. It's an easy read because each entry is just a few sentences.
Excerpts - 1)Even while resting, the battle inside your body is going on, cell by cell. Sometimes just let the body rest so the cells can concentrate on only one job at a time. 2) Regarding Dr's office - Remember, your tumors didn't walk into that office alone. I once told a doctor that unless he could find a way for me to leave my tumors on the examining table while I went shopping, he had to treat all of me, that I was a package deal - mind, body and soul. 3) Regarding hair loss - The fear of losing your hair, along with actually losing it, is truly worse than having it gone. I would've never believed it, but it's true. 4) Yes, yes, yes we've heard it comes back better than before, but you seem to be missing the point. In order for it to come back better than before we first have to lose it. 5) Regarding nighttime - Yes, I realize that everyone experiences nighttime every 24 hours, but not with the same intensity or restlessness as cancer patients. Nighttime blues or frights are a very common and understandable side effect of the illness and treatment. Again, I write the following to let you know that you are not alone. 6) Am I the only one in the whole world awake? With my thoughts screaming like this, how could anyone around me possibly be asleep. -
Mamastewart- what a beautiful and heartfelt post!
Alisha-the walks can be really heart wrenching. I have participated in a few and what kills me is the small kids walking in memory of their Mom. These children have lost their parent at such an early age. That makes me so mad. I hate cancer! I have always felt that cancer is harder on those who love us than the actual cancer patients. As a cancer patient we are focused on treatments and trying to stay strong physically and our family and caregivers are left trying to help and unsure of what we want from them. Keep giving her all your love and support. You are a wonderful and loving daughter.
We are only 4 days into the Pink month and I feel like it has been going on forever. I like the awareness factor but all the pink does get overwhelming! -
Thanks for all your quick responses. I'm trying to get my wife to join these support boards so she can have resource. I don't think she's told any of her friends. I'm a little frustrated & baffled as to why she has not done those things yet but I just have to let it go.
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Art - I wouldn't be concerned about the lack of hair loss. Tell her to enjoy it while she has it! A lot of people (or so I've heard) who do AC first end up having their hair start growing again during Taxol. You just never know.
Vintagegal - I told my hubby the same thing today (my off-chemo week). I told him the weeks I'm feeling good it seems like time DRAGS and I'm just like "let's get on with it!". LOL But then of course by the end of next week I'll be sick and wondering why I was in such a hurry!
Kbeee - you can send me some snow when you get it! We're still in shorts & flip flop weather here in TX. I'm an upstate NY girl at heart so this hardly changing seasons stuff is hard to get used to, even a dozen years later. I wish we had falling leaves and cold snowy weather in the winter!
Does anyone else have a problem with headwear? I must have a big head. I've ordered several hats (a cute little cotton cap and two tie-on bandanas that had a cap sewn in) and NOTHING fits me. They all promise "full coverage" - ha! Not so much. Luckily I still have some hair, so I can poke my little bangs out the front and you can see the bottom of my hairline in the back. Why am I wasting so much money on this stuff? Today I grabbed a pink bandana from my daughter's dresser and tied that on. Perfect - and FREE! I guess most fashionable hats just aren't meant for my head or something. Ugh. -
Vintage - Yes, I see what you mean - I have been feeling pretty good the past few days, but they know what they are doing if we get too much at once we would really get knocked down, we don't want to get sick. How many treatments are you having? I have 8 total , so the last one will be dec. 31 (if all goes well), so I am keeping that in my sights!!! My 10 year old is going up with me this time, so I told him we'll make some cookies to brighten peoples day & maybe put some tracts with them to hand out. I thought it might make it happier for him. He was having some anxiety about me the 2 days before I would go up, so the doctor said it is good for them to see what is happening, as sometimes they create their own idea of what it is like. Here's to #2 with NO SE's!!!!
Lighthouse - Having an awful time finding scarfs that are square that I can fold to tie on my head! I looked everywhere & they are all the scarves you put around your shoulders. SO I called my mother in law & asked if she could sew one if I go get the material. SO I went & got some material , enough to be bigger then like a bandana so I can have a little more in the back. Maybe we should start our own business making them!! -
While I agree that the anticipation of hair loss and the process of losing it is more difficult than once it is gone, don't assume that it will come back better than before - that may be true for some but it is not the case for everyone, and I worry about setting up expectations for those who are new - many experience texture changes, thicker or unruly or curly hair, or thinning, or less than even coverage when hair grows back. ER+ folks should take into consideration that hormonal therapy may also affect what your new hair looks like - you will begin taking these drugs prior to the return of your hair. Not trying to be Debbie Downer, just offering the truth.
On the subject of hair loss specific to drug regimen - Taxotere on the 3-week schedule generally causes hair loss at the same time as AC, Taxol seems to be a more gradual shedding, with the potential of incomplete hair loss - although I did not lose all of mine on Taxotere, and my head hair did not fall out until after my second tx, which is not usual. I had what looked like a dust bunny rubbed all over the top of my head - and I had to shave my legs all through chemo. The first hair to really come back afterward was the post-menopausal mustache, lol! This did not seem fair! Also, when your hair does grow back you may develop peach fuzz on your face - usually if you use a depilatory type product or a trimmer it does not recur. Just one of those weird things that happens - not sure why. -
Pam - That excerpt is fantastic!!! So spot on.
As for "pinktober"... it doesn't bother me at all. My surgeon's nurse even warned me "since you'll be going through treatment during October, blah blah blah". So what? I'm not trying to make light of my situation, or anyone's. Yes, cancer is horrid. I've known WAY too many people close to me who have had it (and some are still fighting). Am I happy that I'm a breast cancer patient? Of course not. Is it the end of the world? No. It's not the end of MY world. I have a disease that could kill me. I'm scared of that, but I refuse to let thoughts like that rule my life. My treatment could work exactly the way it's supposed to and I may live 40 more years - cancer free. I hope so! I think that's why all of the pink ribbon stuff doesn't bother or upset me. Almost EVERYONE knows someone who knows someone who has or had breast cancer. My friend (going through ovarian cancer right now) told me yesterday that SHE is sick of the pink stuff already, and how come they don't have a teal month (for ovarian cancer). She said, then she thought about it, and thought about me, and realized that every time she saw something "pinktober" related, she would use that as an opportunity to think of me and say a prayer for my healing. How can I complain about that? Yes, some companies over-market and use the whole issue for their gain, NOT for the benefit of any breast cancer person or organization. But anything that shows support for the fight I'm fighting? I'm all for it!
Also, some people really struggle with the whole "I have cancer" thing. I post with a group of women on Facebook who are all BC patients, most already through surgery & chemo. They just had a discussion about how most of them don't feel comfortable saying they are survivors of breast cancer, that it's too new, or they're too scared to think they might have won, only to have it come back. I'm in the opposite camp. I read somewhere that a cancer patient is a survivor the day they are diagnosed. I have cancer, I'm going down a long road of chemo, surgery and radiation to rid my body of that cancer, and I'm going to live my life every day as a survivor. I'm not going to wait until a certain number of months or years to be declared a survivor - every day I'm alive I am one!
Sorry if this post got a little preachy or whatever.... I just feel so strongly about staying positive and not letting cancer take over. I live, eat and breathe cancer stuff 24/7, between all of the reading & posting I do, treatments, appointments, pills I take, hair I shed, etc. It's impossible to ignore. But it's not my life. It's just what I'm dealing with in my life. If that makes sense. -
SpecialK - Thanks for the tips on hair loss/return. I'm still having to shave my legs every 4-5 days or I get stubble. After 3 AC treatments. That's crazy! LOL I've heard that about facial hair/peach fuzz, too..... wonder why that happens? My hair before chemo was very course, very thick and very curly. I can't imagine what I'll end up with when it grows back. LOL -
lighthouse - tell your friend that September is National Ovarian Cancer Awareness Month. Here is a link: -
Oh, she knows! :-) She's been fighting that fight for six years. I think she just meant that the whole pink ribbon thing takes over the world unlike any other cancer awareness. -
We are socked in a major blizzard! Thick heavy snow and crazy wind. I did get my treatment in this morning before they closed the center at noon, thank goodness. Used Claritin instead of Benadryl and reduced steroid again, hoping for less of a roller coaster this week. Barely made it home, semi in the ditch on one of the two roads you can take to my house! Crazy weather. -
LHL - Can we merge our heads? Mine is too small!!! My wigs, all ordered according to 3 people who sized me are huge and they cover most of my ears! I put them behind my ears sometimes but then they push my ears out! I should have known; I wear a child's size bike helmet. I also agree with not wanting to feel like a cancer patient 24/7, but wanting to live my life. I love going into work to do projects and such because everyone there treats me like me...no different. It is the ONLY place! All of my friends, family, etc...it's all about the poor cancer patient...uuuugh! -
stay safe, knightzoo!
Thanks, everyone, for the responses to my post about addiction potentials. Didn't keep track of who said what, but I did read them all.
Feeling so much better today. Round 2 was a really rough week after chemo. Gotta figure out what I did different this time so that I can pave a better path for Round 3. -
LHL: Welcome to the big head club! For some nutty reason my head is enormous and any women's hat will never fit, which is the reason I buy men's hats and knit/stretchy hats. Adjustable baseball caps work well too.
I hope everyone dealing with SEs has a break this weekend. I'm glad to be on an upswing. I have to deal with chemo week next week, so I hope it won't be rough. -
Michelle and Lisa - the knit hat at Land's end comes in two sizes and the larger one fits great as I too have a large head. It may be too warm for TX. I also found that some if the scarves at headcovers.com are a good size (padded carol style and they have some 36" squares.) But some of those were too small. They use the same model in a lot if their pictures so I looked for the ones that look larger on her. -
Sorry Special K, I didn't mean to imply promises about returning hair, I was just quoting some excerpts from a book. -
LOL LisaSP - sorry you have a big head, too, but glad I'm not alone! It's frustrating. And Kbeee - I'm sure you feel the same way only the opposite. My one wig that I have fits me fine (I guess, I feel like I'm always pushing it or pulling it to adjust it), but hats are another story.
knightzoo - WOW a blizzard. I'm glad you got your tx in before it got bad, and you made it home safely. Now you just get to ride out the storm (both weather-wise and chemo-wise!).
kjsimpson - I keep track of everything EVERY day in a spreadsheet. I write down what meds I took when, how much, what foods I was able to eat that day, etc. Even on my good days. That way I can always look back to see if I was feeling good, what I was doing, or if I was feeling bad, what worked for that particular SE. Kind of like a geek's version of a journal. -
Good idea, Lighthouselady. I'll see if I can start at least a note on my iphone to track how I'm feeling and when I'm taking pills. -
Lighthouselady, thank you for the positive outlook. Yes you are right- we are all more than this disease, leading fulfilling lives. Let us all remember that.
Wow, I was just away for less than a day and there is so much to read! Keep it coming...
Viji -
Art, I'm sorry your wife is having such a hard time. And being a caregiver to someone who won't lean on anyone else is hard too - I nursed my ex-husband through 3 major surgeries and he refused to let anyone but me take care of him or even offer support, it was exhausting. That said, it took me a long time to tell people in my life about my cancer - it made it so much more real when I told other people. And it was even longer before I could reach out to other cancer survivors and fighters, again, it made it much more real. So be gentle with yourself and your wife, you're both doing the best you can I'm sure :-) -
pam - no need to apologize, lol! I am not scolding - just felt it was important to point out the hair stuff. Sometimes I think the platitudes in books and articles lack the depth of individual experience.
kjsimpson - you might want to use these, click on the Chemotherapy Side Effect Tracking Sheet which is the first one, and the Medicine List, which is the last one on the page - they are in PDF form so I just linked the page - these are from the American Cancer Society. I really liked the Chemo sheets as it allowed me to track my side effects carefully and take the sheets to the next onc appt., and also because the SE changed from tx to tx it was important to note new ones: -
knightzoo- glad you were able to get your chemo in! I was thinking of you when I saw there was a blizzard out your way. Who would have thought that would be happening so soon! -
is anyone else getting their nails dark and what can I do about them? -
Thanks, SpecialK.
Those are very similar to the checklist they have me fill out each time I do chemo. -
Hi - I'm new to the group and i will be taking same chemo drugs as you are - other than the hair loss, what else are you going through? i have the every 3 week cycle for 6 cycles...thanks for any insight you can give me...
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Day 3 of round 2 is starting to kick butt. Dizzy tonight. Going on about 3 hrs sleep. But have to drink, pee, take meds & eat every 2 hrs. How do you get sleep. This round I have tender fingertips. My tongue keeps hitting a tooth & is getting sore spot.
Too early to be talking about Blizzards! I hope everyone hunkers down & stays safe. I'm not looking forward to that.
Close friend went into palliative care yesterday. Weighing heavy on me . -
70charger,
Sorry about your friend, my best friend from high school is in palliative care as well. She has been for for a little over a year. It's so hard because I don't know how to really talk to her any more and don't want to share my own struggles with her either as mine are so trivial. I almost feel guilty at times that my cancer is not as bad as hers, ya know. Prayers going up.
Well, I got released from the surgeon today and am Off to see the Wizard........oops, I mean Onc again on Wed. Will have my results from my oncotype. Praying he's wrong about where I'll fall on my score.
Also have THE worst sinus infection of my life. Got put on Omnicef and praying it works. Thinking that's why I was up so early so many days this week and feeling so down emotionally. Just was getting sick.
Hope everyone has a good weekend.
Lighthouselady,
Meant to say thank you for your post a couple of pages back about Pinktober and how you feel about your fight. I totally agree and am going to copy and paste......then print it out and hang it on my fridge. Just wanted to let you know how much it helped me personally. You are a SURVIVOR and so are the rest of us!!!!! Every single day we are here! Love to you
Kimberly -
Hang in there, 70Charger! I had Round2 last Friday and it kicked me hard for the last 5 days, but today was much much better.
You might try some chewing gum for the tongue and tooth. Avoid a real minty one because mint seems to burn a little on the tongue after chemo (for me anyway). A sugarfree gum. :-)
Make sure you are taking your anti-nausea medication religiously. That was my mistake with Round 2. I didn't set the clock to take it whether I thought I needed it or not and I paid hard for it.
Good thoughts and prayers your way! -
Just have to share what my friends secretly did. I've been trying to get out and walk to improve muscle tone and get Vitamin D and fresh air. So, several of my friends have been walking with me for motivation. Apparently they setup a facebook page and even went to the extreme of getting Team Simpson T-shirts made for folks that walk with me. Found out about it tonight when I cancelled my walk for the second night in a row (blisters... ouchie!) and they were trying to coordinate handing out shirts.
I am SO grateful for the love and support being shown to my family and myself. Overwhelmed...
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