Sept 2012 chemo
Comments
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Englishrose- the cream I was given for my nose is multifunction.
So for cycle 3 has gone easier than the others-yeah! Right now just dealing with mild acheyness and cardboard mouth, oh and so very sweaty! -
QueenKong- yes, I get those sweaty hot flashes too and it is just nasty. I feel like I have chemicals all over me. I have been taking unisom or benadryl to help me sleep at night. I still get sweaty but I sleep through a good deal of it. I didn't take any last night and woke up frequently and I was soaked each time :-/
Mariposa- I haven't lost my eyebrows or eyelashes completely yet but they are definately getting thinner. My eyelids stick together because of the thinning eyelashes and if I touch my eyebrows hair always comes off. It sucks!
Neta- wow, starting rads already! I have chemo till the end of december and then I will start rads the beginning of the year.
Going out to lunch with some friends today. I am going to wear my wig today and hope I can power through. I have been wearing my scarves for the most part, except I always wear my wig to pick up my 12 yr old son at school. It isn't terribly uncomfortable but I always worry that if I wear it somewhere, at some point it will become so uncomfortable that I will have to just rip it off LOL! So I end up just not wearing it much.
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Neta -
Congratulations on putting chemo behind you. What a relief that must be, to actually complete a part of this long process! Good luck with rads, and let us know how you're doing.
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Sisterssss!!!! i miss everyone....i hope all the SE is over and done with i have been home with my baby sister that i raised while my parents worked so im really happy she here from Colorado.....
im half way done with chemo need 2 more then surgery....my last chemo will be Nov 21 so ready for it!!!
i really didnt have any side effects...the only SE that i have till today is my lower back pain from naulasta....i cant event get up on my own but finally today feels ok to do things on my onw...... i volunteered for Komen on saturday on Bayfront park in Miami.....but then i saw an article about stage 4...i believe cherioo put up...it made me mad at first but then sad cause i read all those comments...and i started to think the worse for me..... it had me really going the entire weekend.....but i guess i will be here until GOD allowes me to be here and i have and will put up a fight no matter what!!! i will take it day by day and not read any more about different stages i will focus on my stage myself and i know that not every breast cancer is the same because we are all different .........different stage......... different genes ......i feel good today and im going to have a glass of wine and cheers to my sisters for being here...........
So i was wondering when do we loose all of our hair cause i shaved it off cause i had some small bald parts....but for the most part i still have most of my hair....and its growing????? i have herceptin once a week and i will have my third chemo on Halloween!!!!......
My BCRA came back positive....so im hoping my sister come back negative and also for my daughter...
anyone done the BCRA????
Justegan...great video.....
Have a great day my sisters
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My nails are turning blue/black at the bottoms. They hurt. Is there anyway to stop it.
For everyone starting Taxol soon, I've been reading on the other boards about l-glutamine and how it helps and even prevents chemo-induced peripheral neuropathy. The scary side effect that can cause nerve damage. I've also read that it seems to help people with mouth sores that tend to come up more with Taxol.
I've been prescribed ativan but I only get about 4 hours sleep out of it max. I don't know about taking Benadryl for sleep. I wish I couldsleep longer and stave off the hot flashes. This is something they need to research so little research has been done in that field.
@patrica - I have had the BCRA testing done and am waiting for the results so I can make decisions about my surgery post-chemo. What decisions have you made?
@bearcub - What is a toque? Is that a Canadian thing?
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Patricia, we missed you! I am BRCA neg, had to know. You should change your avatar to one of your great topless pics!
When do you take the glutamine for taxol se's? I start Friday. All the time? -
Queen Kong hopefully I spelt it right a togue is a wool hat....you see skiers with them on and snowboarders....or anyone who wants to stay warm when you are out and about in the cold.....
Where do you live Queen Kong?...I am imagining somewhere toastie year round.
Can someone repost the link to the article about The stages of cancer that everyone is talking about. I was unable to link up on the previous link....I would like to read it...thanks.
Patricia I have bald spots but also not completely bald. I think it may be about 1/8 inch in patches.....1 more chemo and I will be growing it again, no Taxol for me. I still have most of my brows and lashes too.
Hope everyone is having a wonderful week, I am feeling much better today. -
Jojo - I am on weekly Taxol and after the 3rd infusion I had a few minor tingles of neuropathy (feet, mainly). I started taking both glutamine and B-6. The nurse recommended 30 grams of glutamine per day for the infusion day and 3 days after. The 30 grams is to be divided into 2 or 3 portions, not taken all at once. The glutamine powder doesn't really dissolve and it's sort of hard to get down - just mix it with something other than water! I tried glutamine capsules but each capsule is only 500 mg so that would be 60 capsules a day. I found 1500 mg capsules at GNC, but that still would be 20 capsules a day...so I'm doing the powder. The nurse recommended 100 mg of B-6 per day.
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My Jo i miss u tooooooo!!!!
QueenKong im so happy to see you back and strong as ever...we got this ....i have decided to do a biteral mastectomy....since im positive i dont want to worry about going throught this again with my other breast and i will have recontructions and i will get C's....lol.... im a B....im kind of scare of the pain but i heard its not painful.....
Bearcub....i have 2 more chemos and then surgery no Taxol for either....radiation....have you decided what you're having? So if all of our hair dosent fall off we sheved for no reason????? lol.....well at least we know we can look good with out hair lol....
....
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So I have the craziest breast cancer story, because mine is not in my breasts. Mine was found in the RT side of my thyroid. The doctors had it sent to THREE expert pathologist to verify it. So to have clean margins in my neck I had the LT side removed and they tested it to make sure there wasn't any strange unheard of thyroid cancer that might be there. I have had cat scans, mri's, ultra sounds, and pet scan. So far they still can not locate the primary tumor. It is a "CUP" cancer of an unknown primary.
So last week I was having pain in my nipple and discharge, it was one day and went away so they are doing a mammo, tomorrow to make sure there is still nothing there. Plus my weekly blood work. -
Patricia, I can hardly wait to be done with AC. I had surgery on July 12th, partial mastectomy and SNB. Clear margins 12mm each side and no nodes or venous or lymphatic. My tumour was 1.1 cm. I also am doing rads don't know how many yet, and herceptin, and tamoxifen for 5 years...good luck with your BMX, do you have a surgery date? My hair was falling out in the handfuls, so I had no choice to shave it....would have been too sparse and gross. At least this way it grows out all together.
Kidsandlabs, hopefully they find the primary, that must have been frustrating finding breast cancer cells in the thyroid and so scary...do you have dense breasts? I am thinking of you. -
All, for those who have had surgery would you mind sharing why you made the choice you did and your experience/results? I am leaning towards mastectomy of both breasts to never do this again but there are so many types. I have an appt with a plastic surgeon right after I complete chemo. Surgery for me will be early January. Thanks!
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I finished Taxol #8 today. yay! Four more infusions and weeks left of that. I don't have nail discoloration happening; my fingernails and toenails feel a little weird/sensitive and I am very careful to keep them short and try not to use them as tools like I usually do. so far, so good. I get bad back pain usually the 2nd and 3rd day after - I'm taking Celebrex for that and that turns it way down. I get some sharp stabbing pains occassionally and mostly they haven't lingered though my right hip and leg are starting to bother me along with a little general slow down in reaction time in both my arms and legs. I just figure I only have four left so if it does get worse, hopefully it won't be for too long. Also I can't do sh1zz1t where I bend over, my head feels so much pressure! MO thinks it's because I already have low blood pressure and chemo's adding to that.
wow, so I guess that's my bitch list.
There are tips on how to take care of your nails on Taxol and Taxotere in one of the threads here. There are some nail polish and treatments recommended along with the icing that some of you are doing. Might be worth looking for.. hth(edit: technically my list goes on, I just don't even count the dry bloody nose and the dry mouth and the raw throat and sometimes weepy eyes. or the hot flashes. YOU know what I'm talking about...)
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It think what surgery you choose is such a personal decision. I had a double mastectomy. For me it was an easy decision. I wasnt all that attatched to my breasts. They were small to begin with and weren't part of my identity. I didn't want to worry about it returning. Also, although the plastic surgeons can match the other breast....I felt I would always notice the difference and be reminded of having cancer. My goal was to get back to living, not just surviving as soon as possible.
I had immediate reconstruction. I was worried if i didnt do it all at once, I would chicken out. Coordinating the surgeon and plastic surgeon was not easy. I had tissue expanders put in and get fills every month. Fills are really simple and painless. After I recover from chemo, I'll get perminent implants. The surgery was about 8 hours....about 3 week recovery. My TEs are uncomfortable, mostly when i lay down, but I'm happy that I look somewhat normal. I had the gift of someone showing me her reconstruction. It made me a lot less worried. She looked great.
Good luck....what ever decision you make will be the perfect one for you. Don't look back....only forward. -
Jojo
I had BMX also. I was not a candidate for a tissue recon. My decision was based on my sister who has had BC twice she had UMX and said if she had to do it again she would have done both. I also didn't want the worry for the future
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Partial mastectomy on the left breast. The surgeon had said I was one of the lucky ones as I had a choice....it wasn't easy, I was leaning towards mastectomy when I went in her office but because of tumour size 1.1 cm and my breasts size 38 D we went with a partial. With a bra on I do not see a difference between breasts. Naked I see a divot in the left around 2 o'clock. I hope I made the right decision. If it ever comes back, they will come off.
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I am scheduled for surgery somewhere mid-February post chemo. I met with a surgeon before chemo and he said that he recommended a full mastectomy because the cancer was found in three separate areas of the breast. After I heard that I was like, please, take them both!! He then tried to tell me that he recommended just the removal of one because then the reconstruction would be more realistic; it would be modelled on a real breast. This was where I had the biggest problem: my fake boob would be modelled on a droopy, saggy boob that had breastfed three babies. Ok, excuse me? Am I the only one who found that weird? If I have reconstruction I want nice perky ones!!!
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Jojo I had a double mastectomy Aug 2nd. For me it was a easy decision to make . My surgeon asked me what I wanted and I knew I made the right decision. I too had expanders put in and have had them filled three times. I am waiting until after rads and will have implants .
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PAtricia we missed you. I did not post any articles on stage 4 . I refused to look at it. I am standing on my healing and keeping positive . I am so glad that you are almost do e. I have four more of Taxol the. I am off to rads in Jan then reconstruction . Just think how far we have come guys we are almost to the finish line
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Patricia- I was negative for BRCA, that really stinks that you are +
Kidsandlabs- wow! That is crazy that they found it in your thyroid.
QueenKong- since the issue with your nails has already started, I am not sure you can make it better, but here is what I do- I am doing taxotere, and I ice my nails. It helps prevent neuropathy and helps keep the nails from coming off- so far it is working great, I have no lines in my nails at all and very little tingling. I like to buy 2 cups of Sonic ice because it is nearly crushed. I keep my hands in the cups for the entire hour that taxotere is being infused. I take them out to warm up every few minutes, then straight back in the cup they go. It isn't terrible.
Jojo- for surgery, I had a single mastectomy. My surgeon explained that the chance of getting it on the other side was the same as getting it in my bones, kidney, brain, etc. But there was a higher chance of reoccurance on the same side if I only got a lumpectomy. I am okay with my decision, and like that I have a 'good' boob that still has feeling. I have a TE on the other side and it is hard/weird/uncomfortable, and I get to keep them until 6 months after radiation. I am not happy about that but I am making due.
For those doing glutamine, or thinking about it- I found a trick! I mix 1 packet of glutasolve with about 3/4 cup OJ, then I have a cup with about the same amount of OJ without glutamine in it. I stick a really thick straw in the one with powder, and suck as hard as I can and get it all down. I then immediately chug the 'clean' OJ and swish it around to get any lingering grit off my teeth. It works pretty good!
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Foreverchanged- I had to laugh at your being upset about it being modeled after the droopy one. I LOVED my real boobs, even though they were droopy, I loved that they were soft and that they moved out of my way. I do NOT want boobs that are like Barbie and always standing straight up even if I am lying down. I really do hope that my implant has a natural 'sag' to it. All my friends think I am crazy.
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My too Jo!!!!
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cherioooo..im sorry i though u did...u are so right we are almost done ith chemo.....next surgery and radiation .....all of us will stick together cause we all all started together!!!! i miss you my sisters!!!
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I had originally thought I would just have a little lumpectomy and a little radiation and be on my merry way. I asked my first PS if we could just remove all of the microcalcs when we did the lumpectomy and that's when I learned the calcs were scattered throughout both breasts (she actually used the words "like buckshot in your breasts."). She suggested a mastectomy and either a TRAM (but I would have to go off-base and it could take a while because we would have to wait for referrals - hubster is retired Army) or implants. I slept on it for a few days and started doing some research and when we met again a week later, I told her I wanted the DEIP. One day shy of 2 months after DX, I was on the table getting my tummy tuck and boob job courtesy of breast cancer (sorry, but making jokes is how I deal with things).
My surgery was supposed to last 12-14 hours...It lasted 19 because of some bleeding issues (I just recently learned I have the Factor V Leiden gene mutation) and she ended up closing me up and finishing 2 days later. The recovery wasn't easy but it could have been WAY worse. My belly looks and feels great - you can't even feel the scar. My breasts look "normal" in clothes. After chemo, we will talk about the final two stages of reconstruction.
Hope this helps. Hugs and prayers to all!
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Patricia- I had posted the link here regarding the Komen interview by request of a stage IV friend. The link and all the comments are here on breastcancer.org in a topic called "Interview with Komen Official".
I have a closeness with that group because of my best friend. She just lost her husband and now is dealing with stage IV alone. All of us have great attitudes and wonderful prospects for being cancer free soon. It's been tough to find words for her when her hope is gone. Just wanted to share as it brings tears for me many days. -
Damiana - you look awesome
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jojo - I had the BRACA testing which also was negative. I had 4 aunts with breast cancer and my father had pancreatic cancer. The genetic counselor I spoke to said my risk factors were with my age, under 45, invasive lobular cancer and my father having pancreatic cancer. I decided to do a bi lateral mastectomy because of the type of cancer and a genetic link, although not BRACA, I did not want to worry every 6 months.
The pain with the BMX is not that bad, I was out of the hospital the next day, and off the pain medicine within two weeks. I had tissue expander's placed at the same time, and there are in the beginning muscle spasms that are helped with valium, but those also stopped within a couple of weeks. You will have 2 - 4 drains placed during surgery, depending on if you do reconstruction at the same time. They are not painful, just a pain. You need to clear the drains twice a day (my husband did this for me) and keep them pinned up. My surgeon added a pain pump in a fanny pack, which I pinned the drains to while I showered and after the pain pump was removed still used the fanny pack in the shower for the drains. I have been getting fills during chemo with no problems at all.
My best advice is to make sure your plastic surgeon and breast surgeon work together, it was a great help. I was in surgery for 6 hours.
I hope this helped.
Carla
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Hello all! I've been having problems posting but have been trying to keep up with everyone. Has anyone been watching Parenthood this season? Kind of hitting close to home!
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Jo im sorry about your friend....my prayers goes out to her....
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Butterfly...thats great info i have seen couple of ladies with their new tatas...and very happy with them it was just hard to ask about the surgery ...our breast surgeon and plastic surgeors work toghether....and our onco.....Here in miami we our Breast Cancer Center were they all work together..... i love my team before they make any desicions they call each other they treat all of us as an individual.......and i love that.....Thank you sister for all your input regarding surgery im glad that everyone is happy with the desicions and that it was painless.....
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