Triple Negative and Neoadjuvant Chemo support, please?!?!?!!
Hi All,
I have a friend, Joyceska is her screen name, who just became active on these boards. She is triple negative and doing neoadjuvant chemo, and she has some questions that I can't answer. In the bco tradition, would you triple neg bc sisters please support her by annswering her questions here? Thank you so much, in advance, I know I couldn't have gotten through my diagnosis and treatment without my "chemo sisters".....
Thanks again,
Sue (Joyceska is already reading and will post once some of you chime in)
Comments
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Well im HER2 pos, but i did do neoadjuvant chemo with great results, and so did my good friend who is triple neg, so i may be able to help
Laura
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I'm happy to share our experience as well if your friend has questions. My wife did neoadjuvant chemo and is triple negative. She is now having additional chemo before radiation.
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Hi I am triple negative and have found it is stressful doing neoadjuvant. I keep checking to see if it is smaller and wanting it to shrink faster. I had 4 treatments of cytoxan/taxotere, the tumor didn't change much with the first 2 treatments, but with the next 2 it reduced almost half. The the chemo changed to epirubicin (works the same as adriamycin). I have had 2 treatments and it went down a little more. Now I have 2 chemo treatments left and I pray it goes down a lot.
Nodes clear. It has gone from 2.5 to 1.6 The side effects of this last chemo is the pits. I am so tired. Emead has helped the nausea but my stomach doesn't want much. I have found hot chocolate, pudding, yougurt help. It is because of the awful taste in my mouth that it is hard to eat. I rest most of 2 weeks where as with the other chemo I wasn't down a week.
I am older than most of you, and didn't think I would retire at 65 and the next month find out I have BC. We have a 9 year old that we home school and I am able to keep that up. My husband also teaches. I teach math and English. So times we do school curled up in my bed. He likes that.
I do get panic attacks (anxiety and it runs in my family, all 5 of us have it). I am trying to deal with it, would be easier if the lump would shrink quicker. I can see where surgery first would take away that anxiety but then I wouldn't know if it was working.
any help you can give me will be appreciated.
Joyceska (Joyce but I had a time finding a name that wasn't taken...my Polish Grandma nicknamed Joyceska when I was little.)
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My wife and I liked the neoadjuvant chemo because we could see the tumor getting smaller. It went from 3 cm to 5mm. However, two nodes were still positive (one micro and one small tumor) after it was completed so she is getting some more chemo. That was discouraging but it's where we would have been with surgery before chemo anyway. I think it's an advantage that you can see if the chemo wipes it out or not, and if not, can get some additional chemo if your doctors and you feel it is appropriate. I think I read the tumors only disappear completely (PCR) about 20-25% of the time, so don't be too discouraged if it does not disappear. It sounds like your nodes are already clear which is something to celebrate!
My wife finds it helpful to walk daily and drink lots of water (she drank several quarts per day) through chemo. The nausea didn't impact her too much but she did get a heavy dose of Zofran plus the Dexamethasone. She also delivered our daughter (emergency c-section) in between rounds 3 and 4 of chemo, but that's a whole other story!
I hope your tumor continues to shrink but, if not, I don't think you need to panic as the surgery will remove the remaining amount and then I assume you would get radiation and/or could discuss other options with your doctors.
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What a lovely encouraging husband you are...! Your wife is lucky to have you in this battle. You also made me look at this in a more positive angel.
All the best to you and your family.
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Vickan,
Have not seen you in a while. How you doing?
Flalady
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Hi,Iam also triple negative I had chemo before my surgery as well my tumor was 4.5 cm at the start and after just 2 treatments it went down to half and then after my next 2 it could not be felt so we did the lumpectomy and the pathology report came back no invasive cells at all left just the pocket where the tumor was so we finished with 4 more taxols to finish my treatment, because of being triple negative, they have to be aggressive with your treatment, I am about a year and 2 months out of treatment and feeling great and you will too, just hang in there and know that God is still in control of everything my prayers were certainly answered and yours can be too.
Tina
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Hi Joyce, I just celebrated 5 years since diagnosis at age 51. I had a core biopsy in late January 2004, which showed IDC, 2.5 cm, triple negative. A second opinion showed 5-6 positive nodes confirmed by ultrasound and biopsy.
I had neoadjuvant chemo, TAC x 6, dose dense (every 2 weeks), followed by bilateral mast with reconstruction and rads x 35.
I kept feeling the lump for skrinkage during the 6 cycles of chemo. It did shrink each time. Pathology done at the mastectomy showed no cancer cells in the breast or any of the 26 nodes removed.
Every day is a blessing and I am very grateful for having made it to 5 years with NED.
Take care.
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hi joyce i am doing neoajvuant therapy i have tx # 3 feb 26. i am so tired after and achy too.
stay strong
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Hi GMR52, what an inspiration, 5 years and still clear. I hope to follow your example.
rsben70
I had 4 treatments of cytoxan/taxotere, was achy with them and my feet would swell but I was active except a few days. My doctor got after me because I was working in the garden the day after chemo. I was to rest the whole week.
Now I have had 3 or 4 of Epirubicin, I have more side effects with it. I don't work in the garden with this chemo. I rest a lot more, and it lets me know if I do to much. Next week I have my last chemo then surgery.
neoajvuant therapy is cool when you can feel it shrinking but stressful wanting it to shrink faster.
When I had nausea and took one of the pills, I had a different reaction to it. It made me so tired all I could do way lay in bed and not even change positions until it wore off. Then I would take another and back down I went. This went on a couple days before my sister figured out what was happening. I was blaming it on chemo.
Hope you are feeling better. The shot after is what would me achy. Before you know it you will be finished with chemo and life will get better.
Joyce
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Hi Joyce,
I was diagnosed in April of 2007 with two tumors about 3cm each. One triple negative and one with some er receptors (40%). Nodes negative. I had neoadjuvant chemo, 4 dose dense AC and 4 dose dense of Taxol. The advantage of neoadjuvant chemo is that you can see if the chemo is working. Fortunately, it shrunk my tumors drastically. I had a bilateral mastectomy with immediate reconstruction when I finished chemo and the path showed a complete response to the chemo. It will be 2 years in August since treatment ended. I feel so blessed that I have come this far since diagnosis and reassured knowing that the chemo did it's job.
God Bless,
Jen
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Hi Flalady (& other Sisters),
Been a while since I last posted here. So far so good... back to work again and trying to catch up some life out of hospital and treatment (really do hope that I will remain out of that...).
Trying to catch up on the site now how everyone is doing. Unfortunately have to welcome some new sisters to the site. Although I really appreciate all the support on this site and will pop-in more often now.
I have changed my diet (cutting down on fat, limited diary products and no red meat) which I feel really good about. Any more ideas out there is welcome.
Heading for my check-up on the 3rd of March.. so please keep your fingers crossed.
All the best to You and everyone out there. Please stay in touch and keep up your positive attitude.
X Vickan
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tinamae
What was your chemo treatment?
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thanks joyce, i heard with the next round the AC there will be more SEs, right now i have tx on thurs and i take thurs, friday, sat sun mon, go to work on tues, but try to do catch up paper work so i can stay at my desk.
we will get through this, let us know when surgery is scheduled.
hugs to all
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New drugs for TN right now are Ixempra & Navelbine also Gemzar/Carboplatinum with Avastin.
Talk to he doctor about these?
Best wishes
Flalady
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Newalex, I had 4 of the AC and then surgery where the tumor was completely gone and then as a precaution I had 4 more taxols because of being triple negative they want to hit it hard the first time, I worked every day except my chemo days and never really got sick ,I feel really blessed by God to have had such a good response to the chemo and that I was able to work, ,just stay positive and trust that you will make it through.
Tina
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Hi,I'm triple neg and had neo adjuvant chemo (4xfec,4xtaxol) I'm eternally grateful for it as without it I'm certain I would not be here now! My tumour was 2.4cm and had spread to one node, but there was so much vascular invasion it was off the richter scale! I wasn't expected to make it through chemo without mets.....but I did and theres still no evidence of desease and I'm 5+ years down the line! I must be living proof that chemo works well on triple neg tumours.
Josie
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Josie
On your signature, it is DCIS which is not invasive cancer. Was it an error in the signature?
Usually DCIS doesn't require chemo and it is stage 0 not IIB and usually doesn't spread as not invasive.
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Have just corrected it!
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I also have a triple negative IDC 1.8 tumor size with micromets to the first node. I had neoadjuvant chemo DD 4 AC and 4 Taxol. After treatment I had a bilateral mastectomy with immediate reconstruction. The pathology report came back with no cancer found in the breast tissue nor an additional 12 nodes. I also had a complete response to the chemo.
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Sue, dingydangit, you scared me to death with this title; I thought you'd had a recurrence or something....
That aside, Joyce, I hope you will find both the information and the comfort that you need here. I didn't have neoadjuvant therapy, so I can't help you there. Do you have any pharmaceutical, therapy, or relaxation help for your anxiety during this stressful time? (Forgive me if I repeat someone else's questions; chemobrain, you know) It is looking like more and more people are having neoadjuvant therapy with this type of CA, even those whose dx was like mine, so maybe this is a growing trend and maybe they know something better now!
I know it's so hard to keep feeling the thing: you can't stop but you don't want to do it either!
hang in there...
dana
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I had to chime in with my experience. I am so thankful I had neoadjuvant chemo.
My tumor was 1.8 cm with micromets to one lymphnode. I have DD 4 AC and 4 Taxol. I decided to get a bilateral mastectomy becuase I am BRCA1+. My tumor completely disappeared. I had a complete response to chemo. The best thing about being triple negative is that the chemo works so well on our tumors.
Ninel
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Joyceska, I am IDC, 1/11, her (1+) triple negative. I am starting the same chemo that you had. Cytoxan &Taxere. You are the first person that I have seen that used this combination. Most have the other chemo adriamycin also. You sound like you made it through without any big problems.. How wonderful. I was given this regime b/c of my other health problems. I wonder is there anything else you can tell me. Could you eat? any mouth sores? how about numbness? I am really nervous. I start Arpril 6. Thanks
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Hi there, I haven't been on line in a few weeks. I had a bilateral mast on May 23th. The first 4 treatments of TC slowed me down the first week. I was able to keep a pretty normal routine the next 2 weeks. Then I switched not ot adriamycin but to Epirubicin. It is easier on your heart but like adriamycin it has more side effects than the TC combination. I was glad I was taking it alone. My red count dropped and then I had UTI, then with the next chemo treatment a yeast infection then with the 3rd back to a UTI. My red blood count came back up and the cycle stopped and I perked up again.
I was concerned about mouth sores, but my friend told me to suck on ice chips while taking the chemo and it would help reduce the mouth sores. I got 2 sores on the last treatment, 1 healed then another bubble came up and healed quickly. So that was easy. I didn't get numbness, but there again if it is a problem my friend told me to rub my feet with ice during the chemo treatment. It is suppose to slow the blood to that area so it doesn't get as much chemo in the chilled area. I had a little swelling of my feet a few times but that was only the first few days after a treatment.
While chemo works in your system for weeks, it actually leaves your body through urine in 3 to 4 days. That is when my feet would swell and I would get constipated, feel very tired. You get a shot 24 hours after chemo to build your white blood count. It takes about a week to start your levels back up. Many still go to work only missing a day or two. I am lucky, we are retired and so I didn't have to try that. I could lay down when tired. My doctor told me to rest the first week, do not do yard work. (Busted) At my age I needed to rest, I had just turned 65 when diagnosed. Not what I had planned for retirement.
Eating is an experience. The chemo taste will come through your saliva. Some days it is very stong, you eat what ever taste okay those days. I found tea too weak to overcome the taste and milk (with chocolate) would cover the taste. I would drink Ensure HIgh protein drinks when my eating was off. I snack on lots of fruit and I have a juicer and would juice carrots along with other fruits and veggies. Ask your doctor about vitamins and see what you can take.
After 2 chemo treatments my doctor would send me for a sonogram to size the cancer. That can be nerve racking. Is it shrinking enough? My first sonogram didn't show much change, but the next sonogram it was close to half the size. Then we switched chemo and the doctor said it reacted better to the second chemo. They not only report on the size but what the mass it doing. I can read the report but not understand much, the doctor has to tell me if it is good report.
Remeber above all the Lord is with you, He loves you and will give you peace when you need it. We get cancer for many reasons, a polluted earth is a big reason. This is no longer the Garden of Eden, but we can be safe under the wings of the Lord.
Joyce
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Thanks Sue and Joyce for starting this thread. Thanks for the update Joyce.
I had my bil mast last Friday and got final path report back today...Was so disappointed to find out the triple neg status. Won't be able to start chemo until near the end of the month probably. My onc and BS said that most of their patients work thru chemo. I work in a hospital, have 3 kids at home, and am wondering how I'll get everything done in the course of a regular day (the usual) let alone while doing chemo. Appreciate the different perspectives and the what to expect.
I did need the reminder, Joyce-He is with me always and supplies all my needs according to His riches in glory. And, He uses us as His vessels. Thanks for allowing yourself to be used.
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Stock up of frozen pizza and chicken nuggets for chemo days. You can even cuddle and read books to them or pop in a movie for them and rest. It isn't easy with a house full. Let others help you. I tend to help others but this is the time to accept the help. You need rest and healing.
Many do hold full time jobs and that is remarkable to me. We have a 9 year old that we homeschool. I could still do my part of the lessons even if it was cuddled up in my bed. Three and a job is much more challenging. Some schedule chemo for Thursday or Friday and go back to work on Monday. Of course the chemo you are on can make the difference and at your age you have much more energy than I do.
Joyce
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One more thing, in the 3 weeks between chemo treatments there are many days you are normal or near normal in activity. The farther out you get from treatment the more energy you have. I don't want to paint a picture of doom. Many days I worked in the yard, attended cub scout meetings, helped in Sunday school etc. The time I was really down was when I got UTIs and that normally gets you down.
Joyce
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At my age!.......44 now seems younger and younger, especially now.....
I'll stock up on the easy prep foods for the kids. We also started enforcing our chores/routines (spread the wealth)..... Thanks again for the tips. Yes, I've decided that I want to spend as many good days with the kids as possible. If I have to have this, I'm going to make sure I use it to grow. Thus far, I'm changing my priorities and several habits. Sure, I'd love to continue to work and keep my mind off of things, but do I really want to waste the good days on work?
No, really, I did see the rad onc today who spoke with the oncologist. We've arranged port placement the morning before my appt with the onc. in 2 weeks. May be able to start the fun sooner than we thought.
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When I started chemo I was given a heads up. Before your hair falls out you usually have a few days notice. The roots get very tender, moving you hair can hurt. Also you may get a very itchy scalp as a sign the roots are releasing. Then in a couple of days your hair will come out in handfuls. I don't know why this advice helped me but it did. I didn't cut my hair at first but then when so much scalp showed through I grabbed the scissors and cut it shorter. Then I did it again till it was less than a half inch. It was falling in my eyes. Scarfs are really comfortable, you can order hats on line. They have some really cute ones. My neighbor (who had BC 8 years ago triple neg) made me a turban to wear. My sister knitted me several hats. I have 2 wigs from my aunt. Wigs I do not find comfortable and only wear them to church. They make me itch. Once hair starts growing back, I was told that wigs interfer with growth. Do they?????
I finished my chemo and was told to schedule surgery 4 weeks after the last chemo treatment. Now I am Miss Twiggy, flat as can be with a chest full of staples.
There are cancer groups out there that will help with wigs, hats etc. They even have a program "Look Better, Feel Better". If you have the chance to go to it GO. It is free and they tell you all about make up. How do you do this without hair on you eyebrows, no eye lashes. It is a fun time to get together with other BC ladies and share.
Prepare yourself to look in the mirror one day and see a person looking back without hair, eyebrows and eyelashes. I found that so strange. Now where do the eyebrows start and end? I now understand the verse in the Bible where it says, Hair is a woman's glory. I find myself looking at women as I shop and seeing how true that is, even when the hair is messed up and fly away.
Knowing Jesus is with us through all of this is a blessing.
Joyce
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