Calling all TNs

jlstacey

During Taxol I did the following and didn't get neuropathy. But, I know others who did the same thing and still got it. I do think each individual is different in how their body reacts to these chemo drugs. I took vitamin B6 daily and L-Glutamine. I did not ice. For my nails, I put vitamin E oil and tea tree oil on them daily for the anti-septic properties. I had a little lifting of my fingernails, but did not lose any nails.

I also ate lots of M&M cookie ice cream sandwiches. 1-2 daily. I really think that helped with it all . They were actually the only thing that tasted good, so I went with it!

jlstacey

dmp- I have a few questions. Is the C in TC carboplatin or cytoxan? From what I have seen the standard protocol is AC + T. Sometimes carboplatin is added in. I wish I had carboplatin because I did not have pathological complete response (pcr). I'm not sure why they wouldn't give you adriamyacin. I would ask about that- it was during A that my tumor shrunk until it wasn't palpable.

Everyone is different in how they react to chemo. I had AC every two weeks, 4 rounds. Then I had twelve weekly taxol infusions. Taxol thins hair, so my hair started coming back during it. I lost my hair by my second infusion. I shaved it when it really started coming out a lot, but I don't think I actually would have lost all of it. Taxol can cause bone pain. I took L-Glutamine and vitamin B6 during taxol and had no bone pain. But I didn't have much discomfort when I had Neulasta shots either, so each of us is different.

I'm surprised that you are seeing your MO only every 6 months. I see both my breast surgeon and my MO every three months. They don't scans unless you have symptoms. I felt some concern about a recurrence in my brain in January- headaches and some other things. So my MO had me get a brain CT and it was fine. I have some discomfort with the monitoring, but you have to live life not worrying because it will eat you up. I think once you are getting chemo and get beyond it, you will be able to have less anxiety. Also ask your MO to give you a script for something for anxiety. It is COMPLETELY normal to have this anxiety and lots of people get some meds while going through chemo. I also had really bad insomnia during chemo so I took Ambien, so don't be afraid to ask for that because you need your sleep. I took it every night for months and got off it around November last year.

Lastly, don't be afraid to get a second opinion on the treatment plan. You have to be your own best advocate!

HausFrauMi

dmp1960- sorry you found us!

As far as the chemo I am just on my 2nd of 4 infusion of AC then I have 12 T. Painful isn't really the right word. At least for me it's just odd. I don't feel good. I don't feel bad. I don't feel like myself. I nap a lot. I get dizzy feeling if I do too much. My hormones are crazy days 3-4 and I cry a lot for no reason. I swap between constipation and diarrhea from trying to treat the constipation.

You can join a monthly group that starts chemo when you do. Everyone has different reactions. So what I get may not happen to you. As far as hair.... I've cut mine short but prob shaving today or tomorrow. To be honest the hair part doesn't bother me at all. So I have trouble relating with the emotions concerning the loss. When I got diagnosed I cut it chin length and colored it crazy. This past Saturday I went super short over the ears but it's thinning like crazy. I'm ready to just get rid of it and wear cute cover ups.

Feel free to get a 2nd opinion!! I met with a multidisciplinary clinic at my hospital. It was great for all the doctors to review my case and determine the best course of action.

sylviaexmouthuk

Hello Geeper,

I just wanted to say thank you for your congratulations. I hope my long term survival will be an inspiration to you.

I do hope all will go well with your chemotherapy and that it will help you a lot.

Thinking of you and sending you my best wishes.

Sylvia xxxx

sylviaexmouthuk

Hello SA8PG,

It looks as though icing hands and feet seem to be a great help when going through chemotherapy to help with neuropathy. I did not know about this when I was diagnosed in 2005. The one long term effect I have from chemotherapy is peripheral neuropathy in the feet. My oncologist told me it was caused by docetaxel (Taxotere) and that there was no cure! Two podiatrists tested my feet and also diagnosed peripheral neuropathy. It is very useful to let new patients know about glutamine. It is good that you have no neuropathy in your feet.

Thank you for your kind words about me and Titan. It is so good to know we are helping others.

Best wishes.

Sylvia xxxx

Mamiya

DMP,

Getting a second opinion is a good idea because you don't want to be wondering if you did the right thing once you do go forward with treatment, you want to feel good about your decision. Information is power. There are a number of chemo combinations that are used on TN, there really is no "one size fits all." I had carboplatin and taxol and found it to be tolerable, there were some down days with the "carbo flu" and a few nosebleeds but I was OK. Then I did FEC which is very similar to AC and did not have a response at all, in fact I developed skin mets (I have IBC so this isn't something that will likely happen to you) - just saying that what works for one won't necessarily work for another and side effects vary wildly by person. You can handle it though, you are relatively young and it should just be a bump in the road. Good luck to you, let us know what you decide (also a "starting chemo in_____" group might be very helpful, I know it was for me).

Cocker_Spaniel

My heart goes out to all of you ladies just diagnosed or going through treatment but there is light at the end of the tunnel.

With regards to Titan every time I see her she looks more and more wonderful and is living life to the full. She exercises regularly and we used to laugh so much when she did her 5km runs. She made everything look easy and was so much support on here and to me. I just love that girl.

Haus I was so sorry to hear about your wee dog with seizures. Hopefully the meds will help to overcome these. Your lovely girls hair is exactly he same colour as mine was and my granddaughters is. She also liked to colour it for a while but has now accepted her own colour after being called names at school, like ginger and carrots, by some boys. It's so gorgeous.

Sylvia it's always such a boost to the ladies when you come on here. You have such a positive attitude and always have a kind word for everyone.

To the ladies having chemo remember to drink, drink, and more drink, water that is, not wine although a little bit of that won't hurt you. The worst side effect I had was constipation which I have never had before but my onco changed my meds and that soon resolved. Water melon was my go to food because it was cool, not strong to taste and very light to eat when I wasn't feeling up to much. I had no sickness but I was given EMEND which was a god send. I just felt like I had bad flu on my bad days, which were about three to four days each cycle. The rest of the time I felt very well. Yep I had hair loss on the second infusion but believe it or not I think it looks good on ladies and it's not as if you have any control over it. Try to find delight in every single day. Laugh as often as you can and like they say, stop and smell the roses. If there is one thing cancer gives you its a marvellous sense of new vision where you can appreciate everything and everyone.

Ally thank you for always thinking of me, as I do you. Hopefully something will happen soon!!!

Thinking of you all.

Meadow

(((Cocker)))

Cocker_Spaniel

Love you too Meadow my friend. xx

We haven't heard from Shari, LUV, BanR, Jan for a while. Hope all is ok there.

JAN69

Cocker, I'm here, just recovering from the flu, a uti, and bronchitis all at once. I've been reading, just not responding. Think of you often and hope your broken heart is healing a bit each day. Jan

Cocker_Spaniel

Thank you Jan. I am healing a little bit. I got my Tessa's ashes back today so she is home again. Bitter sweet moment though. Little Chloe, our maltese terrier, doesn't know what to do with herself and Bitsy the cat is not interested in playing with her. I don't think I could bear to get another dog because I miss Tess too much.

Hope you recover soon from the dratted flu. We have that season coming up soon as the 1st March heralded the start of autumn. It is still hot during the day though. Don't they say everything comes in three's. Flu, UTI and bronchitis. You have had your lot now and won't get sick for some time. Plenty of honey and lemon hot drinks should help. Hope you feel better soon my mate. xxoxx

sylviaexmouthuk

Hello Cocker,

I was very sorry to read that your pet Tessa had died. I know from friends how much sorrow they go through when their pet animals died. I once had a neighbour with two Burmese cats and they both died of cancer very close to each other and my neighbour was completely distraught.

Thank you for your kind words. It is nice to know that I can try to do my bit to help. A diagnosis of breast cancer, or any other cancer, sends people into shock and it takes time to digest everything and get yourself ready for treatment. This forum is so useful because it shows newly diagnosed patients that they can get through the treatment and have a life after cancer.

I was really thrilled when Titan recently posted. It was so good to know that all is well and that she is now seven years out.

Sending you very best wishes.

Sylvia xxxx

dmp1960

Thank you for reaching out Mamiya. It helps to hear the experience of others. I didn't know about the "I start chemo in" forum. I'll be sure to check it out. I wish you all the best in your clinical trial and wish for you a happy healthy cancer-free future. Many hugs.....

dmp1960

Thank you for the info HausFrauMi. I hope your chemo is successful and that you can put this experience behind you soon! Many hugs...

dmp1960

Hi jlstacey - the "C" is cytoxan. I am getting a second opinion in Philadelphia on the 15th so that I can make an informed decision. I just hope it doesn't confuse me even more! I hope that your next round of chemo works for you and that you are on your way to complete recovery. Many hugs...

chambo

DMP - Welccome.

First, yes TC is one of the standard protocols for TNBC. In fact, I am on it right now. There are several different "standard" protocols - and they have to do with the size of your tumor, whether lymph node were involved, etc. Doctors are guided by these standards for Stage I and II breast cancer: http://www.nccn.org/patients/guidelines/stage_i_ii_breast/index.html#33

I also had a <1 cm size tumor and no nodes involved. 4 rounds of TC seems to be the way many doc choose to go in that situation.

2nd, the side effects aren't too bad, but you will lose your hair. Day 14 seems to be the start of the big time fall out with most losing all of it by the 2nd infusion. Some try Cold Caps with some success. Because my doc worries about long term testing with TNBC, Mets, and Cold Caps, he advised against it, but left the decision up to me. I decided it was just hair, and I went for a crew cut on day 12. This is Day 20 for me and I am pretty much Kojak now. (You get used to it, and it makes for speedy showers).

3rd - hands (and sometimes feet). Yep, neuropathy is a potential. As is nail lifting. I had no problems with either of these so far, but I do have a mild case of "hand and foot syndrome" but only on the back of my hands (which is weird, but happens sometimes). It creates an itchy eczema like response that stops right at the wrists. I will be using the icing mitts on round 2 to try to prevent this from happening again as it was the most annoying side effect of them all.

4th - and most important. You can do this. Read through the Feb 2016 chemo starters. You'll see the fear and then the "we got this". So much of it is the build up, rather than the reality.

Valstim52

Sylvia and jlsStacy, how much do you take of glutamine? the 1000 mg tablets?

sylviaexmouthuk

Hello Valstim52,

I think you have misunderstood my post. I was just saying that I had read a post where someone was saying they were taking glutamine for neuropathy, as well as doing the icing and it seemed to work.

I do have peripheral neuropathy, caused by Taxotere in 2006, but I have not taken anything for it, as my oncologist, two podiatrists and my GP, told me there is no cure for it. I may try glutamine when I have researched it a bit.

If I were you I would ask your oncologist's advice about how to prevent peripheral neuropathy when on Taxol. I actually had Taxotere, but both drugs are taxanes.

Wishing you all the very best as you go through treatment. You can do this.

Fond thoughts.

Sylvia xxxx

dmp1960

Thanks Chambo! This information is very helpful and reassuring. I think you're probably right - the buildup in my mind is probably worse than what I will experience. So much fear! It's reassuring to know that TC is somewhat of a standard for TNBC - neg node. Thank you for taking the time to explain all this to me. I will definitely go on the chemo starters forum. I hope that the rest of your time on chemo is easy on you and that you enjoy a full recovery! Many hugs....

jenjenl

It's official, my boss approved me working from a remote location! We are putting the house on the market this Friday. We have decided to move the family from Charlotte, NC to Charleston, SC. I have this feeling it's now or never and honestly it's the first time in 3 years I've been excited. Can anyone give me recommendations for an Oncologist in Charleston? My negatvity and paranoia are creaping in that C will reuin this plan but am trying to push them out of my mind and be positive and have faith.

SA8PG

Hi Jen,

I will ask my friend there who they recommend and get back to you. I lived there for 3 years. Love!!!! Good for you.

Xoxo

G

Meadow

Dmp, if I have not said hello and welcome yet, I am sorry and am doing so now!

Jen, whoop! Yes! So excited for you and the hubby! I love it that you are doing this!

Cocker_Spaniel

jenjen go for it. It's meant to be or it wouldn't happen. Enjoy the excitement of a new place, a new beginning. Cancer won't follow you I'm sure.

Hi to all of our ladies today and I hope all is going well, whether in treatment or out of it.

Where's Mike lately??.

jlstacey

Val- I followed the instructions on the bottle. It was a powder and I mixed it with lemonade. I had it three times a day. this is what I used:

http://www.amazon.com/gp/aw/d/B0013OXEKK/ref=mp_s_a_1_2_a_it?qid=1457484348&sr=8-2&keywords=l-glutamine&pi=SY200_QL40

Meadow

He is Absent Without Leave....did we give him the ok to be absent...no...

COCKER, I was just thinking a bit ago that I wish we could watch The Voice together. ...my Spouse and I enjoy that show and it has been good so far this new season. Do you have this show? Have you ever watched?

Nalagirl

Hi everyone,

I just met with my medical oncologist and she told me that Alpha-lipoid-acid (ALA) reduce the symptoms of peripheral neuropathy he. Has anyone tried ALA?

I like the idea of m&m ice cream sandwiches!

Nalagirl

Curlyq1974

M&M Ice cream sandwiches sound yummy... Mint chocolate chip ice cream got me thru chemo and rads... yummy!

bluedog

Here's what my MO handed out. I did not take nearly that much but only had neuropathy in the tip of my right pinkie. Maybe I wouldn't even have had that if I'd taken the full amount.

Cathytoo

BRCA mutation better outcomes for TNBC? I just finished readinga study that indicates that women who test positive for BRCA 1 or 2 will have a much better survival rate than women who test negative. Has anyone heard this before? I tested negative which I thought was good. Now I'm worrying again about a poor prognosis. Don't want to go there. Trying to keep a positive outlook.

jlstacey

Oy vay, it's always so doom and gloom for us TNBC gals!