Anyone listening??

[Tricia]

Hi My name is Tricia and I am 31 and was diagnosed Jan 4 2007 after being misdiagnosed for 3 months. I was told I was too young for breast cancer, no family history and "breast cancer doesn't hurt" all this after going to the Dr. complaining of right breast pain. Anyway to make a long story shorter... Excisional biopsy on Jan 4 2007 confirmed 7cm tumor and 4-5 other smaller ones. Had port placed on Jan 18 started my first chemo Jan 22 ( taxol/herceptin) all other scans showed no signs of mets... Praise God!!! My onc called me into his office after doing some research with UCLA oncs and he decided to change my regimen on the next chemo which was Feb 12 He started me on Taxotere, Carboplatin, Herceptin..... and man am I sick. My bones ache, my hair is gone, my vision is blurried most of the time, I run from both ends, I am on all kinds of other symptom controlling medications.... But I have two more pre-op treatments of chemo left and then they will do the radical/Mastectomy and then a year of the herceptin. But I have to say after being this sick...I can't feel the tumor at all!!! So I keep my thinking positive, my husband juices for me every day and I just keep counting the treatments down one by one..... God is good and works for the good in all things. If anyone out there has had this type of chemo please tell me about what you went through and any other ideas on controlling symptoms..... any advice you can pass would be greatly appreciated and used. Thank you and God Bless!!!

[janet/FL]

Hello Tricia
Sorry you are having such a rough time. The chemo experience is so different for each person. Some have few side effects, some have a lot. Even for the same exact treatment. There have been two threads currently for TCH. One of them I will give you the URL for. See if that is a help to you.

http://her2support.org/vbulletin/showthread.php?t=27097

Hugs for the hard stuff.
Janet

[CPA]

Tricia,

What anti-nausea medication are you taking? Zofran worked best for Jill.

Also, watch your raw foods intake. Things like e-coli and other bacteria can cause problems during chemo because your immune system is compromised.

Good Luck.

[SusanV]

Tricia,


So sorry you are so sick...things will improve. I didn't do the same chemo as you, but please ask about the drug "EMEND" to help with nausua and sickness. It is expensive but worth it. I took this in combination with zofran.

Thinking of you

[Emelie]

Tricia,
Sorry you are having a bad time of it. I just completed #6 of 12 treatments of Taxotere and Herceptin. I go weekly and this seems to have been a good choice for me. I get some reaction to the steroids the day after treatment with a flushed, red face. Energy level pretty good this day. I am however, constipated for seveal days afterwards. I drink water constantly and eat a lot of fruits and vegetables. I also have a protein shake every day. The bone aching is bad on day 2 and 3. My aching is primarliy in the rib cage area. I take Ibuprofen for that. It seems to help a little. I am having issues with my eyes tearing a lot. Went to an opthomologist yesterday and had the tear ducts flushed with saline solution and he gave my some steroid drops to take for 7 days. I also have a constant runny nose.
The good side is the tumor is no longer palapable, so I am more than willing to put up with these side effects and carry on. I am scheduled for a modified radical masectomy in April after I complete all my chemo. Then radiation.
This journey is not an easy one by any means. I take it one day at a time and make the most of my good days and try to focus on the positive outcome that awaits me at the end of all this.
Good luck with your treatments and keep writing with questions.
Emelie

[Jean]

Hi Tricia,

Welcome to a wonderful group of ladies and gentelmen! I am sorry that you have been dx with breast cancer. I can relate to all your fears and what
is going to happen next? Everyone is different when it comes to the reaction
of the treatment and yet there are many similiar reactions that we can help
each other with by sharing. I had the same treatment of TCH I had six treatments every three weeks. My dr. gave me Emend & Prochlorperzine for nausea. The Prochlorperazine (10mg) to be taken every 6 hrs. My error was I was feeling okay and did not take the meds and the nausea just hit me and once it starts it is difficult to get under control. So therefore, take your nausea meds even if you feel fine and don't think you need them. My onc. nurse explained that it is vital to take the meds and keep them working in my system during treatment. Once I did that I was able to get rid of 85% of the nausea. Drink water during & after treatment keep yourself hydrated (this is very important). I found eating smaller meals (esp. during treatment) was a great help. Important to watch your diet, I also discovered having brown organic rice and fresh steamed veggies helped my system and I did not have trouble with diarrhea (fresh applesauce and bananas were helpful). By day 20 my hair was falling out in clumps. At this point I just went to the salon and had it shaved, for me it was just easier than having it fall out everywhere. (It does grow back). You will also find that you will have a foul taste and many foods will taste bad. Vinegar was a major problem and I had to have my salads w/o it. Cold iced coffee for some reason tasted the best for me. Give in to the fatigue and rest. I would have trt on Thurs. and went into work on Fri.
but by Sat. was feeling the fatigue strongly so I would rest Sat./Sun and by Mon. was feeling much better. I was able to work during treatment but if
I needed to take a Mon. I did or shorten my day I did that also. I also had the vision blurr but it also passes - I did use a saline eye drop. I also would experience headaches and Alieve would help. The hardest part was the pre-trt steriods which I had a hard time sleeping so my dr. did give me a mild med for that. Tricia if you have any other questions you can e mail me.
Once the TC part of trt is completed and you are just having Herceptin it will get much easier.

It was also necessary for me to have Neulasta shots after treatment
this can cause some bone aches and pains. I also just took alieve for
them.

During the trial comparing TCH and A/C - the TCH did very well with a slight difference but it did not have the risk for heart damage as A/C..treatment.

Try to think and be positive! Please realize that a dx. of bc does not mean
instant doom. Get several opinions and make careful decisions and follow
your good instincts. You will get well and be well, tell yourself this every morning!
I will keep you in my prayers.

Hugs,
Jean

[suzan w]

Sorry to hear you are having such a tough time! I did not have the same type of chemo as you...I had Adriamycin/Cytoxan...and had every symptom in the book! In fact my oncologist cut it short by 2 treatments. It was after surgery that I had chemo so was not trying to shrink a tumor, like you are...I did chemo because of the agressive type of cancer (invasive lobular which spreads in the cells as well as through the lymph nodes) and the Her2 status...my onc. believed that I should have chemo then Herceptin. When I did herceptin it had not yet been approved by the FDA for use in early stage breast cancer, so she prescribed it "off lable" and I was lucky that my insurance covered it.
Sounds like you are taking good care of yourself...EMEND worked wonders for me too...I ate alot of mashed potatoes and scrambled eggs but nothing tasted right! Good Luck!!!

[MJo]

This medicine can be rough, but we need the *+!&*(& stuff. I can't add any advice to the excellent info the other ladies have given. I had adriamycin/cytoxan and then Taxol and Herceptin. I lived on ice cream and spent a lot of time on the sofa staring at the TV. One year later I need a new sofa. The springs are shot. If there is any time to pamper yourself and be good to yourself, this is it.

[Rendi69CA]

Wow. I went though the same thing. I was told I was to young, no family member, and breast cancer don't suppose to hurt. I was 26 year old at the time. I went to City of Hope for the high dose chemo. I was in the hospital for a month. They gave me drugs that help me get though my suffering. I wish you well. God Bless you.

[mindersue]

Hi Tricia,

Sorry you are so sick. I had TCH w/Aloxi, Emend, and Reglan for anti-nausea, and it worked great. The carboplatin did a number on my platelets, so I received less and less each treatment. Needless to say, the first treatment with the full dose of carbo was the worst.

Thank you for sharing your great attitude...yes, God is good!

Mindy

Hi Tricia,

I had taxol, carboplatin, and herceptin in same infusion and had all the side effects you mention and then some, including severe constipation--the latter was the worst. I quit after the second round, primarily because I was not given pain medication or nausea medication. I should have insisted on the appropriate medications to get me through it, but I didn't. I'm doing okay but I do have moments of regret that I didn't finish the four rounds of chemo. I'm on herceptin now and still have blurry vision, a cough, and runny nose, but nothing that I can't live with.

The best news is that when it's over, you completely forgot what it was like. So, make sure your doctor gives you the necessary medications to get you through this. And very best of good luck!

[dee]

Take heart, and feel better.
dee

Forgot to mention that the one food I could eat without a problem was lasagne. We have a pizzeria right around the corner that makes a good one, and my husband got it for me every day. Of course, that may be one reason for the weigh gain!

[janet11]

Tricia, I'm another who went on Taxotere, Carboplatin (and Herceptin). Not fun, but doable.

I also simply 'controlled symptoms': I took Senekot-S nightly for the first 5 days of each chemo cycle to manage the constipation. Took Immodium when diarrhea started. Took a Prevacid nightly for the duration of chemo (plus a few weeks) because of the reflux that it caused.

Also was on 3 anti-nausea meds: zofran, compazine suppositories, and lorazipam (not sure of spelling) for "breakthru nausea". That handled the nausea for me. If I had needed it, they would have added Emend.

Hair went mostly. When it was falling out, I had it buzzed to about 1cm long. FYI: I spiked it with yellow spiking gel for Halloween. But I had so little hair that I could only get 3-4 hairs in each spike (*grin*). But it was fun.

I used Tylenol for aches and pains, and could ignore most of it. I also got a mild sleeping pill from my onc. I learned to definitely TELL my onc what bothered me. She was MOST helpful, but not a mind reader.

Oh yes: my life-saver was Biotene mouthwash (on your grocery shelves). The worst thing for me with Taxotere were the taste bud changes. I LOVE vinegar, and it was so sour I couldn't have anything with vinegar for the entire time I was on chemo. I still don't much like chocolate (and NOTHING chocolate was safe from me in the past). Each cycle, more and more foods went from 'good' to 'ok' and more and more went from 'ok' to 'disgusting'. Don't worry about it: just find what you still like and know that this will come back.

The hardest thing for me the first cycle (other than the GI upsets) was "sewer mouth" -- the most disgusting taste in my mouth that I've ever imagined. I described it as feeling like I had cleaned the sewers of Dallas with my tongue. It was so bad, it would wake me up (if I could get to sleep). As I said, my salvation was Biotene mouthwash. After I found that, I'd rinse every 10-15 minutes during bad times. It helped a LOT.

Another thing that helped: make a daily journal: a piece of paper with the numbers 1-21 on it (for a 3 week chemo cycle). For each day, mark down anything you feel (can't sleep, constipated, didn't want coffee, etc) and in another section, mark down all pills you take that aren't on your normal "anti-nausea' schedule. This way you'll find out what your routine is. I found that "sewer mouth" hit roughly days 10-15 of each cycle, and I knew I would feel GREAT during week 3 of each cycle. By learning this, I could plan when I'd probably feel ok and when I wouldn't in the future. And it's a great thing to bring your onc so you don't forget anything.

My chemo ended mid January 2007 and now a month later, it's only a vague memory (*smile*). You too will get through this!!!

All the best,
Janet

[MCS]

Tricia,


you will make it!

this is the treatment at all the uc campuses. friend did at uc irvine

these are some of the things that helped me

biotene for dry mouth

a tbl of magnesia every other day for constipation

sarna lotion for itchy skin

vit e oil for nails- they peel

ativan for anxiety, also helps with joint aches

zofran for nausea

limit use of tylenol- not good for liver. use ibuprofen instead

ambien or other to sleep

sleep, meditate, breathe, watch funny movies

you're shocked but believe me (us), you're a trooper and you will come out the other end of tunnel.

glad to have you here

XOXO

MCS ( maria)

I wish I had used this site earlier when I decided to stop chemotherapy. I would have been more aggressive in asking for medications to help me through. So,Tricia, you made the right decision coming here. All this good advice is priceless. I hope, very much, I won' need it in the future, but at least I know where it is.

[sabpri]

I can't beleive how totally stupid some of these OB's are. I had the exact same thing. Went to OB with a painful lump in April 05. Told me it a blocked milk duct from nursing my twins, BC didn't hurt, I was too young (36) and no family history. I left and didn't think about it again until it blew up in August. I thought I had an infection. Long story short, I had a 7cm Tumor and 2 smaller ones, plus 7+ lymoh nodes. I did chemo first to shrink the monster and then double mastectomy. I did 4 AC and then Top Onc here said the most aggressive treatment would be Taxotere, Carbo and Herceptin. They had me do it weekly for 12 weeks. It was very, very tolerable and I really didn't have a lot of problems. The worst was my taste buds went away and everything tasted like rubber. I knew when I thought Chocolate tasted bad I hit rock bottom! It did all come back (as I am sitting here eating a chocolate bar!),

Since I responded so well, we went to surgery after 9 weekly treatments were done. I still needed to finish my treatments, so I asked my Onc if we could just do one big dose, the 3 week dose, instead of 3 more weekly doses, so I could just be done with it. She agreed and man was I sorry that I did that. What was left of my eyelashes and eyebrows came out, I was really sick and could not get out of bed for 3 or 4 days. Maybe you could ask if you could try it in smaller weekly doses.

Feel free to e-mail me if you need to talk further.

You take care of yourself!
Natalie

[Belinda]

Tricia - welcome and sorry about your diagnosis. I am 11 yrs older than you (42), but we are on a kind of parallel track. I was diagnosed Jan 3, after the cancer showed up in my lymph nodes on a mammogram. It had been my NY resolution to push my surgeon's buttons harder about some pain in my breast, after having a microductectomy in June last year because my left nipple had been bleeding - path results had come back clear, no evidence on Ultrasound or Mammogram of any tumour (there still wasn't, except for one node on Jan 3) - so it had been put down to mastitis!

I have just finished the first week after my first AC treatment, and will get to Taxol and Herceptin in May/June. Not the most pleasant experience I've had, but the onc is going to add emend to my meds next time.

Take care, and pls feel free to keep in touch. We will get through this!

Belinda

[Joy]

just wanted you to know that. I am another one that was brushed off because of my age and lack of family history. After my first mammo (for which I had to wait to weeks with a palpable lump) they put me in the radiologists special room (I've learned that this is rarely a good thing). I was sitting there, very nervous and a nurse came in to check on me. She could tell I was panicked and she said, "How old are you?" 32. "Any family history?" No. "Have you had children?" Yes, 2 (still breastfeeding the second one). "How old were you when you had your fist period?" almost 12. "well, you don't have any risk factors really, I'm sure you'll be fine."

ALL THE WHILE I am sitting in a chair facing a huge poster that says "70% of women diagnosed with breast cancer have NO risk factors." I guess she missed it.

Then the grim radiologist came in and said we needed a biopsy, but he thought it looked very much like cancer.

So here's to us...the young and the STRONG!

[Tricia]

Well it has been just a little over a week since my latest chemo and I am just recovering. This TCH kicks my butt.... I have never been so sick in my life. My WBC dropped after the last round so my onc put me on neupogen (spelled wrong I know) injections for 7 days my husband gives them to me every night at 9pm and does a great job but I think it's actually making me sicker. My bones and joints ache so much and I still battle loose bowels, break out in cold sweats where I feel instantly weak and need to lie down. After the last round I ended up in the hospital and my onc said that only 4-6% have this bad of reaction to TCH but March 26 is the LAST round and then surgery about the third week of April if blood counts permit and then Continue Herceptin until Jan 2008 and then Tamoxifan for the usual 5 years.... this is all if no mets show, which I believe that God will take care of. You ladies are awesome to share your stories with each and everyone of us..... Thank you all for the support.