Calling all TNs

aeryno

It's been awhile since I posted but I was perusing this thread and thought I'd check in.

Someone asked about aluminum free deodorant.  I've been using Earth Science Tea Tree & Lavendar (http://earthsciencenaturals.com/product/245/Deodorant-Tea-Tree-%26-Lavender-2.45-oz.-.html) and it's been wonderful! A little sticky at first and it took about 2 days for it to really work but I've been using it for nearly two months now.  It smells strong at first but otherwise great.  I've also used Herbal Clear Sport  (http://www.herbalclearnaturally.com/home.asp) when I was running and that worked as well.

Next week is my last EC treatment and so far so good. I'm slightly nauseous most of the week of treatment and work from home but by the weekend I'm good and the follwoing week (this week) I go into the office.  Other than being slightly tired things seem to be okay.

My main problem is pain/redness in my arms a few days after treatments. I saw the triage nurse on Monday but she confirmed it wasn't due to the epirubicin leaking and that it was almost like an allergy - just a reaction to the treatment.

In August I'll start my 12 weeks of Taxol and wanted to ask what that is like.  How are the side effects? I heard it can be taxing on your vein and I'm not so keen on a picc line or a port and will ask my MO but wanted to get some opinons as to whether it was better to start with the treatment via IV and go from there.  I'm really hoping the nausea won't be as bad but after reading this thread I'm a little freaked about losing my nails! LOL

One last note -my pic is not representative of my current hair cut - it's MUCH more sparse now!! 

Thanks everyone for posting and helping a girl through all of this 

NavyMom

Sending hugs to Luv.  Thank you LMM for posting an update.  Please let her know that the TN's are pulling for her.

slv58

Wishing Luv feels better quickly! She is lucky to have such a loving daughter! Lots of positive happy vibes your way!

Kayak2

Hi aeryno - Everyone is different, but Taxol was very easy for me..... no nausea, no nail issues, and barely any other side effect to speak of.  They give you IV benadryl to prevent any allergic reactions, so really the biggest issue for me was trying to arrange rides, since I was afraid of benadryl's drowsy side effect and didn't want to risk driving myself back and forth.   I had a port, so vein irritation was not an issue.  Since you are having 12 weeks of taxol (as I did) rather than the compressed dose dense regimen that others have had, the likelihood for side effects is lower.  Hope your treatments are as uneventful as my were.  Regards.  Carol

Wrenwood47

Another interesting article from Life Extension....maybe a cure is closer than we thought.

http://www.lef.org/news/LefDailyNews.htm?NewsID=19623&Section=DISEASE&utm_source=DailyHealthBulletin&utm_medium=email&utm_term=Disease&utm_content=Top%2BContinueReading&utm_campaign=DHB_130716

adagio

aeryno - I didn't get a port and my veins were just fine. Although I had mind every 2 weeks for 4 treatments . Side effects on taxol vary from person to person - far less nausea in general - but for me I had joint aches and pains and a bit of neuropathy which was managed by getting a reduced dose of taxol. Over all, taxol seems easier for most people.

adagio

Luv - glad you are at home. Hope you are feeling better real soon. Thoughts and prayers are with you. Hugs!!

kathyrnn

ALHusband - this a place of support for EVERYONE on this journey, including husbands. I'm very glad you've found this place helpful.



LovinmyMom - Thank you for the update. Your Mom is in my thoughts and prayers every single day.



I wanted to share with all you ladies that I was REALLY, REALLY BAD at my visit with my MO today. (The purpose of the visit was to chose my chemo and to arrange to transfer to a local facility for the treatment)



She asked me what I had decided. I explained that the decision had been difficult because 3 MO's had all given different recommendations. I reached in my bag and took out a small gift box and proceeded to shake it. I opened it up and reached in and took out one of the many slips of folded paper that were inside the box. I unfolded the paper, read it and looked at her and said, "okay....I'm going with CMF." (I wanted to bring a Magic 8 Ball, but I couldn't find one)



I wish I had a picture of the look on her face!!!!! Her eyes got as big as saucers and her mouth dropped wide open. She blurted out, "OMG.....tell me you didn't really just pick your chemo by that method!!!!!!!" She figured it out quickly when I started to laugh. (All the slips said CMF). I explained that it wasn't really "a choice".....out of all the chemos that were suggested, it was the only one that was at least mentioned by all 3 MO's (none of the others were the same).



In my defense, when I met her 3 months ago, I warned her that I was going to be her "worst patient". Sadly, this poor, very sweet young woman is finding out that I was telling the truth!

adagio

kathyrnn - that story about your MO visit just made me laugh so much. Thanks for sharing!!! Not to sound negative, but sometimes I think that is what the medical community does - just picks  a treatment out of a hat - and most of us go along with it!! Scary thought - eh?  

Don't worry about being the "worst patient"  - it is the "difficult patients" that get the best treatment. Good luck.

schatzi14

aeryno...I finished my 12 weekly Taxols 18 months ago and I am now almost 70. I had weekly IV's with no problems at all. Sometimes the drip would be a little painful at the site (no port) and the nurse would just speed up the drip a little and that took care of that problem.

I got a very LITTLE neuropathy in my toes on both feet which I still have but it is not bothersome at all. Just a little numbness but no pain and no trouble walking. After the chemo was done, I noticed my big toenails were dark at the cuticle but that quickly grew out as well as the lifting of one nail on the side. I just kept an eye on it until it grew completely out so that I didn't catch it on anything.

I had nausea about 3 every afternoon for a few months but the gravol type meds they gave me in the beginning worked just fine. I was fatigued but that was more likely my age than the Taxol. I did get sleepy tho during the IV so you should make sure you have someone to drive you home after the treatment. After the first AC chemo, the Taxol was a walk in the part...so were the rads if you are having those as well.

Good Luck!

natL12

AlHusband---I finished chemo late Oct. 2012, and November was a wash-out. Developed Lymphedema and had to travel to a PT/Ot for treatments most of that month. December I started radiation, and although I was very tired, I managed to drive by myself (an hour drive each way) and get home without falling asleep at the wheel (except once when I went off the county road near home and into a snow bank. Woke up and hit the brakes just in time to NOT go down into the creek.) In January I finished chemo and we wnet to Florida for 2 weeks, and I managed to walk 3 miles on the beach.  Then I knew I was on the mend.

But I'm still not ready to walk a half-marathon as I used to do. Age may be a part of this slow recovery. I'm 76.  Nat

natL12

Kathymn - I love the story of choosing your chemo treatment.  Good chuckle there.  Nat

kathyrnn

Aeryno - I did 12 Taxol then 4 AC. I didn't have a port. I made them start with the veins in my hands and gradually work their way up my arm. My veins are still in perfect shape and they had no problem doing blood draws using that arm after treatment. I found the Taxol to be fairly easy. One tip: if the IV site gets an achey feeling, have them put a warm towel on it. The heat opens up the veins. I did lose all my toenails, but it didn't happen till about 6 mo after finishing chemo. I didn't lose any fingernails.



Adagio & Nat - I'm glad a gave you a chuckle. Getting different chemo recommendations with no rationale why one would be better than the other was frustrating. I felt like I should get some monkeys and have them throw darts at a dartboard to make the choice. I figured the little trick with the box clearly reflected how I felt about the whole process and I didn't have to spend a lot of money on bananas.

lizlori

Aeryno,

I am in the middle of taxol treatments which are weekly. I have a port. So far I am doing well, no pain or neuropathy.  And my hair is growing back. Strange cuz my eyebrows are gone and I am in the midst of teatment.   I do get tired, but it is tolerable.  I talked to a young gal who lost her toenails and some of her finger nails, but is feeling good.  This is much much easier than a and c treatment.......Good Luck...and take care....Lori

aeryno

Wow, thank you Carol, adagio, schatzi14, Kathy and Lori for your insight.  I don't like being surprised so having some inclination as to what to expect helps.

Continued good wishes to all!

ALHusband

aeryno my wife just completed number 9 of 12 weekly Taxols. In 9 weeks, so far she has missed 3 days of work. She felt very good for most of the first 6 or 7 weeks. Went to work every day. Weeks 8 and 9 you can tell it's catching up with her. She's getting tired faster and having slight nausea. Her counts (red and white blood cells) are dropping a little each week. My point being that she has had great weeks for 7 out of 12 and numbers 8 and 9, while not as good as the first 7, weren't that bad either. She has no issues with finger or toe nails at this point. She is a little achy...but it's tolerable. Bottom line, even if the next 3 weeks are terrible, she will have been pretty good for 75% of the treatments. Not a bad percentage. Be strong. Eat well. Stay as positive as you can! You'll get through it!

Netter

I just came home, (Thursday), from my 3rd infusion.......... I had an immediate bad reaction and my onco said I am finished with chemo.  I am a little worried if I had enough chemo, but also happy no more!!!!!  Will see her in 3 weeks and wondering what is next?  Anyone had an experience like this?  Also, ladies with loss of toe nails....I have been using shellac on my toes and finger nails.  They look fine so far.

kathyrnn

Netter - sorry about your bad reaction. Will you be doing radiation?

schatzi14

Netter...I also had to stop my 4th DD AC after getting blood clots in my lungs. I continued with 12 weekly Taxols instead of the 4 DD Taxols. They were rather uneventful but I continued to give myself a shot of blood thinners daily for 6 months. I was concerned about the one missing dose but I had no choice. I had 16 rads after the chemo as well.

Netter

As far as I know I will be getting 6 weeks of radiation.  I understand that is all that can be done for TN?

adagio

Netter - I was once told by a naturopathic oncologist that some chemotherapy is better than none at all - if your body was complaining about chemo then not doing any more makes sense. After all - it is all about making you well - not ill. I did have a reaction to Taxol and had to have it given very slowly for the remaining infusions. I also had my dosage reduced with AC and with Taxol because I didn't want lingering side effects. Trust your body!! Perhaps your onc will come up with a different drug for you try. Keep us posted. Hope you are feeling better soon. What kind of symptoms did you have during the reaction?

SweetheartinTX

Hi Everyone,



I was dx with TN in late May. My name is Jami and i am 27 years old. I am married with 2 young girls (7 & 3).



I went to a mud run in April, injured myself, developed a lump and thats the beginnings of my breast cancer story. I did the genetic testing to find out i am BRCA 1 positive. No shock to me though because i have a family history of breast and ovarian cancer. However, it was a shock to me to actually get breast cancer this young. Which no matter your age, i know that nobody ever wants to hear the words "you have cancer".



Anyhow, glad there are other ladies out there that can relate to me with the same type i have. I haven't been able to do much reading on this thread yet but i am going to try so that i don't ask too many questions that you all have already answered.

Netter

Adagio,

As soon as the taxotere started, my throat got tight, face got hot, lower back hurt and blood pressure went to 80/50.  It was immediate.  My nurse shut it down right away.

kad22

Jami- really haven't posted on this thread for awhile but come back to visit. You have really touched me.. I was 37 with a 15 year old girl and I thought that was young. I hope you have family and a good support group for you. I have been canacer free for 3yrs. So you can do this it may seem impossible at first or during certain times but it can be done. I wish I could do more for you or have magic words to make it all better or for it to go away but instead if you have any questions please pm me and I will be happy to talk with you. There are so many wonderful women on these boards you have come to a good place. Take care.

Kelli

SweetheartinTX

Hi Kelli,



Thank you, yeah I am very fortunate, ( in a oxymoron kind of way, lol) to have a great support group. All of my family and friends have been great through this with me. I don't know where I would be without them. However, it's still hard to talk to some about exactly what I am going through so that's why I signed onto this site.



I hate to hear that you also had to go through all this. This has got to be the best place I have found for info and just be able to talk to other ladies who are going/gone through what I am. All the roller coaster emotions i have felt in the last (almost) 60 days is crazy! But I am doing good right now. Feeling good and just trying to stay positive!

kathyrnn

Jami - I'm sorry you've had to join us but please know that we will be happy to help. As an old woman, it breaks my heart to see someone so young join us. Yes, you're right, no one wants to hear they have cancer.. but it seems especially unfair when I see someone your age have to join us.

Please don't hesitate to ask questions. It doesn't matter if the question may have been asked before. This is a long thread, and you don't need to read the whole thing to get the help you need. Ask away, and one of us will do our best to answer.

SweetheartinTX

Thank you Kathy. Yeah everyone took it really hard when they found out. Especially my husband. And it hurt me to watch him hurt so bad. He is dealing with it a lot better now and has become my rock!



My questions are mainly about tips on treatments and best ways to get through them. I have already been given some great tips for the ladies on the Starting chemo July 2013 thread" but I just want to make sure there's nothing I am missing. At the moment I am worried about the potential nail loss... I don't know why but that scares me. I have already come to terms with loosing my hair. It hasn't happened yet but should start happening soon. I bought some hats and am considering a wig.



I hope everyone is doing well.

sweetpickle

Sweatheart- Ive lost a thumbnail and a toenail and I didnt feel a thing. It was just the top few layers of the nail so underneath was new growth, doesnt hurt at all.

argynis

SweetheartinTX, I am about as old as you (28) and started chemo in May. I had 4xAdriamycin and Cytoxan dose dense every 2 weeks followed by 4xTaxol. I have 2 more Taxol tratments to go. Are you having TAC every 3 weeks?

I think being younger and active makes going through chemo a little easier. I started loosing my hair about 15 days after my first AC treatment and my period has stopped after 5 treatments (hope it comes back afterwards...). I have done 6 treatments so far and I still have some hair on my head (I look like baby) and I do still have my eyebrows and lashes (althoug thinning and not growing anymore). No problems with neuropathy and nail loss so far - but my big toe nails feel strange and my nails have stripes (one for each chemo cycle). I could always get back to almost normal (with less endurance though) by the second week after treatment but wit ha downward trend.

Are you having/getting a port? I decided not to and so far it works fine also just using one arm.
Let me know if you have more questions!

Una2008

Hi Jami.....So sorry to hear about your situation.  I was diagnosed in April just after my 38th birthday.  Its been difficult but it does get better and easier as the days go by.  I have a 4 year old daughter and I have to be strong for her.  I had a mastectomy and I am doing chemo now.  I have finished 5 weeks of Taxol and it hasn't been to bad.  You have youth on your side and with the support of family and friends you will make it.