Starting Chemo October 2009
Comments
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Jojo, you may not be feeling well but at least you have your humor..(((big soft and fuzzy hugs))) feel better soon.
Marie, you dr. kind of freaked me out too...I was told these SEs were small as well..and one would hope that the professionals know what they are doing, and wouldn't do something to harm us. One would hope.
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I'm sorry if I freaked you out - I'm freaked out too.
I don't want radiation but I keep thinking that I have to do as much as I can to fight this thing and if radiation is recommended it isn't just for the fun of it right?
The dr did start off the session by telling me that for my type of cancer I need to have radiation - even with a mastectomy. He was very willing to answer my questions and discuss my pathology report with me. I could have taken as long as I wanted with him and as it was I was there for over 2 hours.
As far as outlining all the risks - I do think he was covering his a$$ by telling me all about the risks.
JoJo you are right in that it is 1 to 2% that develop problems with radiation but I'd rather it be 0% thank-you-very-much!
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I am trying to catch up on reading all the posts, but if you miss a couple of days, it is very hard to catch up again.
Sounds like everyone is taking care of themselves and just trying to get through day to day. I know it is tough and I feel your pain.
Good luck to everyone who had a tx this week and I hope you all have mild SEs.
Hugs,
Juannelle
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JUANNELLE
Its so nice that you keep popping over to see how were all doing i like seeing your face its very comforting
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Marie - I actually saw a radiation onc before I started chemo. I wanted to do the mamosite radiation but was too young in the rad onc's opinion. He had good reasons and all of his other explanations were very thorough. I am going to go ahead with radiation. I few reasons: with triple negative it's pretty much the standard, I want to do everything possible to get cancer free and the onc told me that in his years of practice he'd only had 2 people refuse rads. One didn't make it a year and the other was back in 15 months with breast cancer again.
Also, my rad onc went ahead and sent me to a physical therapist for lymphadema. I still had swelling from surgery but with a business trip planned a few months later he didn't want to take the chance that I would get it. He also felt that most of the cases he'd had where a person developed lymphadema they had symptoms before they started radiation. The more severe cases can be headed off if you know how to take care of it and he feels prevention is the best way to handle it.
After all we have suffered with the chemo, the side effects of radiation seem mild. I don't look forward to going to the doctor every day for 6 weeks, but as my boss keeps saying: "It's better than the alternative".
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Hello everyone! I haven't been posting as much as previously, just ready to have THIS part of this whole thing over with. MARY, I HAVE ONE MORE SMILEY THAN YOUR CHART SHOWS....JUST FOUR MORE! Four more weeklies, I'll get my last one in a little over three weeks. I had a weird feeling the other day when I realized that if I had done 6 doses of THC instead of the protocol I chose, I would have had my last dose! Oh well, there were reasons I chose my protocol, and this regimen has been tolerable if not enjoyable. I took one week off so I could leave town over the holidays or I'd only be two weeks away.......
Glad to see that everyone seems to be moving along....and starting to think about rads. I have to have lymph node removal before I start rads so it will be awhile. The nice thing? I get a month between last dose of chemo and surgery. Doctors want to be sure counts and all rebuild. I think it will be nice to get a break.
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JoJo you crack me up. I am sorry you are still not feeling well. I hope your bone pain goes away soon. I had terrible bone pain with taxol so I know what you are going through. Percocet was my friend. I am so glad I am finally off percocet and bone pain free. You will be there soon as well.
Marie my appt with rad onc is on Thurs. I think they have to give you all the possible risks. I am having rads because I had lumpectomy and I am triple neg.
Hopbird - so glad to hear from you. You are almost to the finish line. I know you are tired of chemo. Stay strong.
Snuziq- yes I am TN also and rads are not an option. I have had my first experience with cording but that seems to be going away. Please share any prevention info you learn from the PT.
I am finally SE free from ,last chemo tx in terms of pain. Still have minor fatigue, bald, and bloated. My husband has been working with me in terms of stretching and massages to reverse the cording in my arm. It has gotten so much better. I have my range of motion back and the pain has greatly reduced. I hope soon it will dissappear completely.
Still thinking of all you ladies still on chemo. You are all so close to the finish line and I am rooting for you. Wishing everyone a wonderful SE free weekend.
Anita
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jojo, just because I have finished, doesn't mean that I don't care how the rest of you are doing. I may not post as much, but I try to keep up. Besides I would miss hearing from the princess if I did not get over here every day. Hope you are feeling better.
snuziq, I think you are wise to do the rads. We have to throw everything we can at this monster. I think this is especially important for you younger gals. I am 60 and I know I want to live as long as possible. There will never be an guarantees, but at least we will know we threw the book at it.
hopbird, sorry you have to have another surgery. I know it will be nice though to take a break from tx, so enjoy it while you can.
anita, glad you are getting some of the kinks worked out. I am also pain free and still suffering from fatigue and fluid retention. But I guess those things will go away in time.
Wishing everyone a restful weekend. Hope all your SES are mild.
Juannelle
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Greetings all,
Marie and Snuziq, I too am TN, so rads were a given for me. But I love my rad oncoand like Juannelle, I want to do everything I can to fight this.
Snuziq, my rad onco is sending me for lymphedema therapy too. I started having symptoms before I started rads last week. I'm catching it early, but it sucks to have this started when they only took 5 lymph nodes.
One by one we keep filling up our smiley faces! Hugs and SE-free days to everyone,
Sido
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Hi all, I don't post often but I do follow this thread quite closely because my daughter started chemo along with all of you in October, she has just competed Taxol #3. She mentioned she noticed her wrist feeling like a piece of concrete with tingling in her hand...assumes it is neropathy from the taxol but thought it wouldn't start until after 5 or 6 treatments. Is there something to take to help with the neropathy? I have found a ton of info from you ladies which I have passed on to her as needed, but can't seem to remember what helps with neuropathy, Vitamin B6 maybe? She recently went to her regular MD and was put on Lexapro, she's tired of being sick and tired! It doesn't help that she has a family history of depression. She is doing great overall and I'm extremely proud of her!
Marie, I had radiation 20 years ago and the skin on my breast is just fine, looks exactly like the other side! The tattoos are so small, just like pencil dots so no one would ever notice. I am extremely lucky in that I had 34 lymph nodes removed and have never had any lymphedema. Do have a little stiffness in that armpit from time to time but I hardly notice it. Have not had any problems with my heart, lungs or anything else from the radiation. I know that some people do, but of the women that I know that have had radiation, I have not heard of any lingering side effects.
I wish all of you well, you are all amazing women!
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Dear SadMom,
For preventing/reducing neuropathy, have her take Vitmin B complex and L Glutamine. Regulaly massaging the toes and fingers helps great too. -
Thank you so much! Will let her know.
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Hi sadmom. In addition the vitamin B6 and L glutamine, I also take neurontin which is a prescription. It has helped with the neuropathy in my fingers. I like your daughter started to get tingling after my first treatment. Hope this helps.
Anita
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Thanks Anita. She sees her onc at Baylor in Dallas, they don't seem to tell her about all of these things you can take for the various se's. She only sees the doctor every three weeks now, so hasn't reallly had an opportunity to ask her.
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Marie - my younger sister had a similar dx to yours a few years and she was enrolled in a clinical trial for rads and only received treatment for one week. Perhaps there is a protocol that will give some of the benefits without all the risk factors.
Mary - I completed Taxol #5. Also I have 12 treatments total and I think I only told you 8 when I started.
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I was laying in bed last night at 1:30am thinking about how much this group has changed since we all jumped in...
Juannelle...I remember before your first treatment you discribing the bag you would take to the hospital...I think it had everything, but the kitchen sink in it...I was picturing a huge rolling piece of luggage, and here I had a small nylon bag with only a few things..I was wondering who of us was crazier..
Mary, I remember how you had this huge wig collection and it seemed that every time you posted you had a new one...I was jealous and wanted a selection like yours...now I don't even wear the one I have unless I have to. I was also glad to see another Canadian face.
Anita, you are like the mystery lady, I always wondered, and still do what you look like...hint hint,.same with you Unkleswife, and many others.
Azdiva, I remember thinking how lucky you were to be living in Arizona and I can still see you out on those dunes celebrating Thanksgiving. I wondered how you would keep sand out of the stuffing.
Shelby, a lot has changed for you as well, you have become a Mrs., and you were so brave to have topless pictures on your beautiful wedding day..I bet a year ago you wouldn't have thought you would be at this place in your life.
Mary, i remember thinking several times reading your posts that you must be a nurse or a doctor since you knew so much about the medical field...I felt like I knew nothing about this crazy cancer thing. I feel like you are our wise leader...
Jojo, or should I say Princess JOJO...you have made me laugh so many times...I always look forward to your posts. you are like a breath of fresh air in my day..you need to get out your special Princess wand again soon.
I remember all these wonderful things about each and every one of you..I wish I had the time to list something about each of you, that makes you special to me.
I guess all this to say we have come so far as a group. We have come from being overwhelmed from hair loss and fear of chemo to ending our treatment and facing the future with brave and optimistic hearts. I don't think I could have made it this far without you ladies..We rock
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Michele ~ you just made me cry with that great post !!! It is so true ~ while I started my chemo on November 2nd, I started here on the October board getting a wealth of information as you all started your journeys. It made my fear into the unknown a gentler tumble. I too was so envious of the wig collection thatI started one of my own ~ and wear NONE of them for the most part. What a waste of money, I will have to donate them. I could not imagine this journey without the support of you wonderful girls. From the sad, mad, happy, funny, painful posts ~ we have been in this together and have truly come so far. Thanks Michele for such a beautiful post.
Hugs ~
Alicia
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I second you, Alicia. Michele, that was such a great post, you must be feeling reflective today. We're all getting closer to the end of this leg of the journey, but have so much more to go. I'm so grateful for this group of women, who have been so supportive, made me laugh and cry. Who knew? I look forward to continued communication, and it would be so fun to meet y'all in real life, maybe someday?
Peace to all,
Shelby
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I feel bad I forgot to include you Renee, I thought of something then chemo brain kicked in and I forgot to write it....
Renee, I remember thinking how beautiful you looked in your picture and that you looked to young to be a grandma...you must have been a baby when you had your first child...but mostly I remember thinking how horrible it was that you would have to go through cancer two times in yor life, and you seems so happy and positive. I remember thinking, wow she is a nurse, Dr.s and nurses don't get sick...they are super human...but, I guess we are all just humans.. each of us the same..
once again I didn't meen to forget you...you my dear are unforgettable
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There is you too, Michelle, who seems to go through so much but you keep on truckjng and saying everything you think! I enjoy reading your posts also.
And MAGOB (about whom I am worried and Jean who has my same doctor and Meredith who we have not heard from in a while but was worried about losing her hair but looked so pretty w/o it.
Just to name a few more -nausea and chemo feeling today after probably too much activity yesterday- gentle is the word for today.
Love to all-Valerie
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Hi,
These last posts are great. I agree with all and how this site a blessing and all of you a blessing. We have been there to support each other no matter what. Our chemo journey may be coming to an end, but we do have some miles to travel. I too have chosen to do radiation. My radiation oncologist is an amazing doctor and he recommended strongly that I do the rad. I thought that I wouldn't have to do rads because I had a mastectomy, but even with 2 postive nodes he feels it is the extra insurance that I need. I figure I have come this far so I will do whatever it takes to ensure my health and well being. My main concern now is that I had reconstruciton with the mastectomy and have a tissue expander. I worry about my skin and the exchange surgery later on. This also will prolong when I can do the exchange surgery, which will now probably be this summer. Hopefully the tissue expander will be fine and the exchange surgery too. I have chemo #5 on Thursday and then only 1 more to go. I can't wait to be done with chemo!
To all getting chemo wishing you minimal Se's. Hope everyone has a good week.
Lainie
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MICHELE
I Carnot stop crying .I also was thinking the other day how this road has been such a nightmare and i often have felt like the only one on this road until i come here and talk to you women who are total strangers to me , and i only have one link to each of you and that is we are all on the same road fighting the same thing ,and we know what it is like to have theses types of fears , crying moments ,angry times ,fearful and wanting it all to stop and to leave us alone and get back to our lives and we trust each other with our emotions cause we all have the same feelings .Yep its been great going through the good times with everyone and their life changing eperiences , the wigs ,all the pills ,all the loaded up chemo bags ,all the shopping experiences ,the scary test results, and our little poopy fairy , and the best are all the laughs , you guys have been not only my rock but i know if i didn't have you all to come to i would of pulled out of chemo thanks guys
OH shit my key board is so wet
Well after that, Ive had such a hard time after the last TX I'm just not bouncing back as good as before my Hemoglobin or what ever ,has been low and a few other things from my bloods , 6 FEC is a hard one to get through so Ive been told, and my dose is a high one some days i want to tear out my oncos hair and i have been seriously thinking about only doing 5, missing the last one ,of such a strong chemo would that really make any difference ??? .
There is a few ladies that we haven't heard from in a while has any one sent out any p/m or spoken to them on another forum
Ive got my wand out a few times lately Michele and tried it on my self ,but the buggar wont work properly ,its not taking any of my commands, i suppose i better get my gutsy side back and focus on the BIG 3 Gs GET A GRIP, GET OVER IT ,AND GET ON WITH IT
JO JO JUST AND SOON TO BE PRINCESS JOJO
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Jo Jo I can not believe you just wrote that- I have been thinking all day- do I really need that last dose? It has been so hard and yes I love many of the things I have learned and life will be appreciated every single f-ing day b/c it has been such a fight but..... can I omit the last one? what are you thinking about this and have you talked to your onc. I do not want to be a bad influence but man I have been thinking the same thing.
Love to you all- Valerie
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I just read on the TC thread that another woman got 4 rounds w/ same stats (2cm and 1 node i think but sooooo close) I asked nurse how he decided (onc) and she said its an art as much as a science - huh- I thought there was some kind of formula - I dont even know- Valerie
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@Jojo and the others thinking about that last dose: Last week, I was in the hospital for my last chemo (3rd Taxotere) but, unfortunately, I could not receive the dose due to an allergic reaction. It was such a surprise since I had received Taxotere twice before (Dec 3 and Dec 21) without any such problem. It is funny enough that between Tx #2 and #3, the thought of not receiving the last Tx had crossed my mind and I even smiled at the possibility. But the ACTUAL CANCELLATION of the Tx was devastating to me and I completely crashed, I had my first and worst breakdown since Dx in September. I was so determined to throw everything possible to that damn crab. Now, four days later, I keep talking to myself convincing me that the chemo regimen was indeed successful. I'm not as upset as I was.
On another note : As I was receiving chemo prior to surgery, we were able to assess the efficiency of the regimen, the onc. confirmed that the tumor had shrinked and is comfortable with going to next step: surgery. Now, I focus on surgery and rads (hopefully no more chemotherapy). Anyone having pre operative chemotherapy and what are the chances of getting more chemo AFTER surgery?
Hope this shed different light on those doubts re: last dose.
Courage ladies
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Catharsis,
I also had a reaction to Taxol. The doc then gave me Abraxane. Ask your doc if that is right in your case.
Love -
Princess JOJO and Valarie... I don't know what to say about the chemo. I HATE HATE HATE it. But I want to give it all the fight I can so I will take my poison as awful as it is. But you have to do what makes you comfortable. Everyone is different. I support you all and am here to give out (((((HUGS)))))))) Now pep talk me the end of the week when I start the impending doom of another Taxol.
Oh Catharsis, so sorry you had a reaction, but glad IT is doing it's JOB on your tumor. I have had 2 tx's with no reaction.... now fear it is still a possibility. ugh !! I don't know about chemo after surgery ~ I would imagine pathology report would determine if that would be necessary. Maybe someone else can shed some light for you.
Alicia -
Michelle you and others are so correct on how this thread has helped us get through this part of the journey. I have learned so much and been able to share so much on this thread. The most important things learned was we are not alone and we can get through this!!
One of my good friends has a sister who was just diagnosed with ovarian cancer with many areas of mets. I suggested she find a discussion board like ours. This poor woman rather not know what is ahead, isn't ready to deal with any of it. I wish she could know how much it helps to have a supportive grou[ to share the fears, anger and tears.
As far as finishing chemo, certainly something to think about but my feeling is I can't handle the thought of skipping treatment and later this awful thing comes back. I have to do everything possible now. I still worry about being triple negative and hope I am doing enough. I have treatment #5 this Wednesday, then on to #6 then rads.
Jean
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VAL
The only thought that hangs over me is if i do decide not to go for the last one and move on to rads and hormon treat is that if it does come back i know i will blame myself to a degree and the mind games that i will be going through like if only i just toughened up and had my last one and Ive spoken to my family and friends about this and they are shocked that i would of even thought about it and then there is Sam he said that i haven't got a choice i have to do it , then there is all the medical people ,at my last infusion i mentioned to the nurse that i wasn't going to turn up to day and that i was thinking about throwing in the towel, well ,word got around and i had the welfare worker having a chat to me, the breast care nurse having another chat to me, and then over comes the onco and gives me a half an hour lecture on the importance of chemo and why such the high dose for me , i know in the end it is OUR CHOICE FOR OUR BODIES but i don't know if i got the strength to fight everyone one this .VAL i suppose my dear friend we have to make choices that are right for ourselves i Think at the end of the next two and a half weeks i will be sitting in that chair for the last time.
MARY K
your on the same as me and only one to go as well how is your body and mind handling this i am usually a pretty tough girl and has had a lot of big bumps in my life but this is really pushing me to breaking
JOJO JUST
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Oh girls, you make a person feel so good. Thanks Michele for saying such nice things and as we all come to the end of our chemo journey, I am reluctant to give up this thread. I want to make sure everyone gets through.
I know I only had to have 4 treatments and I am so glad that it is over. I am thinking of ways to get around chemo, if I land in the wrong bucket in the future. So I take my hat off to all of you that are having 6 or 8 treatments. I think I would be in the same place as you, if I had had to endure more chemo. What ever decision you make, just don't look back, just look to the future.
Well lovely ladies, have a good evening and if you have a tx this week, wishing you mild SEs.
Love to all,
Juannelle
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