Hello and Questions Update

[Shadowpilot]

Hello everyone,

Thanks to you all for the supportive sharing and encouragement. I will be starting Taxol/Herceptin on Jan. 11th. This was a hard decision and I fell on both sides of the fence almost daily for weeks. I am on this ride now and am trying not to project the affect it is going to have on my body and my life. I am trying to take it one day at a time. But it is hard not to be overwhelmed by everything that needs to be juggled. It takes so much energy to get things scheduled and pay attention to all the details. I struggle to find the questions that will get me the information that they take for granted. I have learned so much from reading the posts from you all. I worry that the medical community which does this stuff every day takes for granted some of the little things and we don't find out about it until we are in the moment, or experiencing the after affects.

I am getting into a ramble when what I really wanted to do was thank you all and ask for your continued care in the weeks and months to come.

[Sheila]

Shadowpilot
I have been on Taxol and Herceptin together for over 7 months....my legs ache, getting worse as time goes on, and of course the hair issue, and a little indigestion, but other than that no nausea or anything...the premeds (steroids and Benedryl) seem to be the worse for me...they make me so tired....even my counts have been perfect...I hope you have no effects....you'll do fine!!!!

[AlaskaAngel]

Hi Shadowpilot,

Best wishes for no recurrence, minimal side effects, and minimal long-term effects now that you have reached a decision and are ready to move forward. I agree, this is the best place for sharing information, and I hope you will share what you learn as you go!

AlaskaAngel

[Jean]

Hi there Shadowpilot,
The hardest part (making the decision) is behind you now.
I promise, it is not as bad as your imagination is envisioning.
The unknown is scary - these are known for sure.

1. Be prepared for your hair to thin out and more than likely loose it.
Not a major - it will grow back! Prepare in advance and look for a nice
wig or head covering...I found that my hair foccules actually hurt and were sore, so it was easier to get a GI jane hair cut and this way I did not have chucks of hair falling out. I have had many bad hair days...where I drove my husband nuts...after the chemo treatments started I started to say, "Now I have NO hair days"...keep your sense of humor with this.
Loosing hair can traumatise some....but keep it in perspective,
you are fighting a major battle to remain healthy.

2. Don't know if you working? If you are - plan your treatments at the end of the week on a Thurs. The kick back from treatment will not
occur (if any) for two days. This way you will have the weekend to rebound and rest. You may feel tired...

3. Herceptin is rather easy, can have some muscle ache I would take
Advil for body aches and kept my legs raised on a pillow at night for good circulation.

4. Wear very comfy cloths to treatment, loose, soft and warm. Treatment rooms tend to be chilly.

5. Do not eat foods that are high in acids...I took Prilosec which is over the counter for reflief from acid and heatburn. It did the trick...but be sure to start the pills about three days prior to treatment since it take at least 48 hours for them to work.

6. If your Dr. is giving you meds for nausea "TAKE IT" even if you think, or feel you do not need it. Once nausea starts it is hard to control, so
keep it under control at all times...Take the meds.

7. Eat as healthy as you can
8. Try to walk, and if exercise...even a small amount it helps.

9. Drink water day of treatment (don't drown yourself) but you do want to flush your body.

10. You may feel flush and see a pinkish color to your face after herceptin treatment (after your home) that is normal. You may also
have a dry cough, that happens also.

11. Some dr. allow supplements during treatment with taxol, make sure to check this with your dr. first... ...my dr. did want any interference during the treatment.

12. After Taxol I was allowed to take supplement during the herceptin,
make sure if you take nothing else to take COQ 10...start with 60mg.
morning and night then build up to three times per day.

13. Stay away from people who have colds during Taxol...your inmune system is lowered at this time.

14. Do Not have manicures or pedicures during treatment, less chance of infection...do your nails yourself. Some of the gals put packages of frozen peas on their nails and toes during taxol treatment to avoid neuropathy.
Ask your dr. about any meds to avoid neuropathy. Some took B6 during treatment to avoid neuropathy. Once again ask your Dr. You may not
have any problems with neuropathy just giving you a heads up.

15. Have your teeth checked and cleaned prior to treatment. Once again avoid any chances of infection..etc. during teratment. You want to keep your treatments on schedule.

16. Take a small bag of goodies with you to treatment, dry animal crackers, fresh apple, yogart, sucking on hard cancy or life savers.


Treatment can drag on time wise at your treatment center..so take a good book or any project you feel like doing. eg Knitting, mail, etc. Look at treatment as you are taking back control, being positive takes some practice, so be kind to yourself, take nice warm soaking baths, do things that make you feel good. A little trick that I did for myself, I always went into treatment with my makeup on and wig, no matter how I felt, it was important to me that no none think of me as sick.

Most important say to yourself daily "I can beat this" A positive attitude helps.

If you have any questions just out reach to me. Wishing you all the best!


Kind REgards,
Jean

[Bill]

Hi Shadow! I'm glad you made a decision. When my wife and I faced the same thing you a facing, my father said to me,"Just remember, it gets easier to deal with once you start going and it becomes almost routine. You'll get through this." He was right, as usual. Shadow, Jean gave some great advice. I can add a few bits that came from my and my wife, Nikki's experience. She was on Taxol, Herceptin, and Tykerb ( and Zometa) for about 15 months. We went to chemo. every Friday. For Taxol, they gave her Aloxi (nausea, I think), Decadron(steroid), and Benadryl. Here's the important part- they normally infuse the Benadryl over 10-15 minutes. That made Nikki really antsy and gave her "restless leg and arm" type symptoms. She could not sit still. Once they began infusing the Benadryl over a 30 minute period, however, it made her drowsy and she slept through most of the treatment. I observed this in other women in the chemo, room as well. Nikki had very little nausea from the Taxol treatments. The nurse gave her 2 Tylenol before every Herceptin treatment. Also, I understand how difficult it is to keep all of the doctor's appointments and medications and every thing else straight. That's alot of stress all by itself. If you haven't done so already, start keeping a notebook with you at all times, and write down all questions you have, doctor's apps. and dates and times. Often you'll have questions for the doc or nurse and can't remember what it was, lol. Also, if possible try to have the same person go with you to all doctor's visits and treatments. I know that's tough for some, we were lucky that I was able to be there for all of Nikki's. Also, use a technique I often employ. If you have a question, ask your doctor, ask the women on this site, and ask your chemo. nurses( a great source. of info.) Some things are not a black and white situation, and by using this "survey" method, you can usually gather enough info. to help. Please remember, once the first treatment is over, you will probably feel better. The worry and stress at this point might be the worst part. Chemo for the most part has come a long way. I hope this has helped. We're thinking and praying for you here. Love, Bill

[CoachPlayWin]

Shadowpilot,
Add me to the list of people who are glad to hear you've decided to go forward with the chemo. I am nearing the end of my treatments, and as awful as it's been, I am happy for the opportunity to hit this wit all that I can. It's definately do-able as long as you have a good attitude and a good support system. I was fortunate to have both. Remember that this is time for YOU...sleep when you need it, cry, laugh, whatever. The time will pass and you will get through it and be better for it.

My advice is to ask them to infuse you slowly if possible. Bill mentioned the Benedryl...they always do mine at 50mg over 30 minutes, which works well. I have to have the Taxol done very slowly to avoid any allergic reaction. As long as they do that, it hasn't been bad at all.

Good luck...when do you start? We'll all be watching for more replies from you.

[Bill]

Hey thanks, coach, I'm sorry, but I always forget to mention dosages. That's important. Great advice to you Shadow, this is your time. You do what you need to do get healthy. You can do it. Try not to dwell on it. Deal with the details of your treatment, but you have to make the good times "in between the cancer". God's Blessings to you, Bill

[Sheila]

I forgot to add in my dosages, I get Decadron IV push over 10 minutes, 8mg, Pepcid 10 mg IV push over 5 minutes and Benedryl 50 mg IV push over 5 minutes...I get the Benedryl first and after that I am so groggy I could care less....if you get the Decadron IV push, you'll know if its given too fast as it is a butt burner...I do get the sore legs/restless leg syndrome about 2 days after treatment, althogh this past time i got it the day of treatment....my Taxol is over 1 hour and the Herceptin 30 minutes (after the loading doses).

[Janelle]

Shadow,
I'm so happy you made a decision! Congratulations. I experienced very few side effects from taxol and herceptin. It was a breeze for me expecially after 3 months of A/C. I hope you have an easy time too. I experienced no nausea which was the worst side effect for me with the A/C chemo. One thing to be prepared for though given your age....you will experience massive hormonal swings....be prepared for crying jags and extreme sadness. In my opinion this is related to chemopause (of course, dealing with a cancer diagnosis is tragic in itself) but I could not believe how sad I was. I am not a baseline depressed person and I wasn't prepared for this part of it. The good news is that the mood fluctuations are TEMPORARY (or at least they were for me). I got my period back 6 weeks after chemo ended. Also, hot flashes are hell. Get a fan for your bedside.

Good luck and PM me anytime.

Janelle

[sassy]

My original diagnosis did not inlcude testing for HER2. The trial results were released just prior to my finishing A/C----I saw it on TV and asked my new onc about it, who then did testing and found that I was HER2 positive. This changed my treatment plan overnight and introduced a whole new set of questions that I needed time to wrap my head around.

After being home for a day or two and going over everything new I had been told, I faxed a long letter to my onc comprised of all my questions and concerns.

I first received a call from a resident answering all my questions, then my onc called to make sure that I understood everything and was comfortable with my treatment plan and did not have further questions.

Composing the letter gave me the opportunity to gather my thoughts and cover all the areas of questions and concerns. My onc and the staff at the cancer center were very attentive and thorough in their responses to questions and concerns, and have continued to be so throughout my treatment.

Perhaps putting all your questions and concerns down on paper and faxing them would be a possibility for you.

As you move into treatment, I think you will find that the journey, although difficult, is certainly "doable", especially in light of the benefit.

Wishing you the best of luck,