At the end of my positivity rope...

[Andrea Barnett Budin]

WELL, WELL, WELL, MICHELLE! I hear you!

In '95 I had Adriamycin X 4 + CMF X 8. In '98, my bc metastasized throughout my liver. Stage 4, HER2+ 80% (that's how they rated it back in the day), ER-/PR-. I endured 9 mnths of Taxotere and it was hell, I won't lie. But I survived. And so will you. After the first 4 mnths I thought that Freight Train drug would do me in, but I rallied. And so will you!

Taxotere is not a poison! It is a LIFELINE, that pulled me through rough waters as my cancer cells were raging. It got every last cell. As for you rest of me -- it ravaged my stomach lining and caused me to begin adding Irritable Bowel Syndrome to my list of enemies. I took Imodium (2 at a time) every time I had an episode, and that was 10X a day. When I turned myself in on this, my onc asked, Then what happens? Then the diarrhea finally stops. And what happens the next day? I am *normal*. I got his blessing. 20 Imodium in a day was good. Go for it.

KY JELLY is sent from heaven. My tushee stopped bleeding and said thank you every time!

Experience has taught me that Prilosec every day is extremely helpful to the throat thing and the feeling mid chest that feels like you're having a heart attack. In fact, my doc said -- take 2 at a time, if 1 doesn't work! ANYTHING THAT HAS AN M IN IT (MYLANTA, MALOX AND SUCH) MEANS THEY HAVE MAGNESIUM AND THIS MEANS -- POTENTIAL DIARRHEA! So stay away from these!

Also, for me, yoghurt and dairy products are a NO, NO for belly issues (NOT belly dancing however) and bathroom drama. Also anything greasy (oily or fried), sugar, nuts -- all bad and irritating causing issues.

NAUSEA -- do not wait till you're nauseous. Like a migraine gone awry, you can't catch it. ZOFRAN is the big guns and does the trick. I had to take it 4 hrs after tx, 9AM the next day and AS NEEDED. I learned to differentiate between NAUSEA and *just God awful* QUEASINESS. For the latter, PHENERGAN worked wonders. Zofran made me really tired, zonking me out, so sometimes the Phenergan was the drug of choice. At night -- go for it! (I learned that -- for me -- neither KYTRIL nor COMPAZENE work for me, even if given along w/my infusion.)

Probiotics (friendly bacteria) known as ASIDOPHILUS 2 X a day helps the diarrhea issue. Fennel Seed (480 mg) 3 X a day also helps settle the stomach and calm that sound of rusting pipes and gurgling coming from your navel. ANTI DEPRESSANTS HELP IBS! (It took me 8 yrs to figure that out.) Zoloft (50 mg) calms my nerves (including those in my belly) and lifts my spirits -- chemically balancing me so that I can be ME.

Taxotere made every part of me severely dry. I needed to use REFRESH + (just saline) in my eyes every single hour for wks till I got that under control. I needed the KY vaginally and rectally. I needed Curel EVERYWHERE ELSE, and VASELINE in my nostrils and on the soles of my feet (which demands socks so you don't traipse that everywhere you go, including sheets) 2 X a day. Biotene as others say for the throat. Gargle.

The Decadron/steroid/Dexymethazone makes you hopped up. So you cannot sleep. Plus you cannot sleep cause you're crazed by the emotional trauma of it all. So ATIVAN (anti-anxiety) and/or AMBIEN (sleeping aid) are NEEDED. Your body heals best during a good night's sleep. YOU MUST LET YOUR BODY HEAL FROM THE SEIGE IT IS *NECESSARILY* UNDER to control the bc/HER2 and the chemo side effects. You OWE it to yourself to let yourself HEAL, to help yourself HEAL. Use your mind and every fiber of your being to HEAL. Focus all your energy on HEALING. Command your body. And -- inform the Universe of your clear Intentions and your passionate and firm Expectations!!

Write -- I CAN DO THIS! on colored 3 x 5 cards in bold block letters and scatter those reminders throughout your house! KNOW that you are doing all you possibly can to eradicate the canser . SMILE as often as you can. Smile throughout your body, not just with your lips, but with your heart and Soul and liver!!!

Keep drinking filtered or bottled water throughout the day. I drink around 11 GLASSES OF WATER EVERY SINGLE DAY. Good for your skin. Good for flushing the toxins out of your body. Good for your kidneys. ALSO -- though I love ice water -- can't drink it. TEPID keeps your belly calm and happy. I cater to my belly.

You must eat as much protein as you can, Michelle, as well. I found I could eat oatmeal, a handful of nuts ONLY, cucumbers (which I previously hated), lots of salmon, plain chicken (boiled if possible -- actually quite good, along w/the broth you boil it in, maybe w/soup greens, maybe w/noodles). Small amnts. As often as possible. Some docs say eat nothing raw, so I only ate cooked veggies and could only tolerate bananas, apples and pears. Other fruits gave me IBS problems, even if cooked. So, I made a list of *trigger* foods. Not foods I am allergic to, but that cause me to live in the bathroom.

KEEP MULTIPLE PILLS AT THE READY AT ALL TIMES. I went nowhere without them!

Roxicet for the deep muscle pain I felt throughout my legs and arms at all times, helped w/the sleeping problem AND -- the CODEINE therein causes CONSTIPATION, so my onc said -- GO FOR IT, if you need to, with that in mind. I just love my onc. He helped me at ever turn. He was highly aggressive for my highly aggressive cancer. He saved my life. (Read my signature for details re Herceptin, et al, if you like.) And PM me if you want as well. Any time.

I apologize for the long post, but I had lots to tell you! And you sound like you need help, Michelle, so -- we're all here for you. AND YOUR ONC SHOULD BE THERE FOR YOU TOO -- 24/7, IN PERSON, OR BY PROXY IF ON HOLIDAY!!! YOU SHOULD HAVE ACCESS TO ONCOLOGICAL HELP WHENEVER YOU NEED IT. YOU SHOULD BE TAKEN SERIOUSLY. YOU ARE NOT WHINING. YOU ARE NOT BEING PEST. YOU ARE A CANCER PATIENT WHO NEEDS HELP! EVERY NURSE, SECRETARY AND DOC SHOULD BE RESPONSIVE TO A PERSON ASKING FOR HELP, ESPECIALLY WHILE UNDERGOING CANCER TX!! PERIOD. This is your right. I am sure you are reasonable and ladylike, but when you are in trouble, you should be able to get a return phone call certainly the same day, and hopefully within hrs. You should not be told on a Friday to call again on a Monday. I'm just saying...

With a big hug and bunches of positive energy for my Sister,
Andi

[Louise O'Brien]

Michelle:

I've been thinking of you - and because you're from Canada - I'm wondering if you are getting the supporting medications you should be receiving.

A year ago at exactly this time, I was where you are now. Absolutely miserable, on a drug one nurse told me would be a "piece of cake" compared to my first three rounds on FEC. They had just changed my drug protocol to six rounds of FEC & Taxotere about two weeks before I was to start treatment. I think it was in response to some studies that came out of San Antonio but I was happy to hear it would be six rounds instead of eight. I thought "I can do this". Ha!

I don't know if it their surprised reaction to my symptoms was because they didn't have enough anecdotal reports on Taxotere or what. Even when you read info on side effects, there's not too much about the severe reactions many of us had. I too had the godawful rash and a pain in my skull that was unbelievable. My blood count had dropped through the floor and I was also getting injections of Epo.

And just like you - I posted a note here describing those hellish symptoms and asking for advice.

You didn't say whether or not you were given medication prior to these rounds. If you weren't, you should have been. The standard here is several doses of dexamethasone and ondansetron two days prior to treatment and one day following. I was also given a prescription for proclorperazine to treat nausea.

Because I was on steroids, I had to deal with constipation and by the time I moved to the second dose of taxotere I decided to be proactive. I didn't wait to take Tylenol 3 for the pain, I took it before. I didn't bother with stool softeners, I took a laxative after the second day. (Although I realize your situtation is the opposite).

The final two treatments were easier but did cause me to write this poem...

"It's on day four
When chemo takes its toll
And Alice falls down
The rabbit hole."

Oh - the nurse who told me it would be a piece of cake? I saw her recently and she admitted she has a friend on the drug now who is going through hell. She was not my main chemo nurse. Luckily I had a very good supportive one who, by the way didn't hesitate to consult another oncologist if mine was away.

Hang in there and as everyone says, insist on medications to help you manage these symptoms. After that, it really is one day at a time

Last spring, I saw a woman receiving one of her last Herceptin treatments. She looked wonderful, nicely made up and well dressed with a smart short haircut. The thought of bald, pale, sick me getting to where she was seemed impossible at the time.

But I'm her now, and you will be too.

[~Bellydancer~]

As for the premeds, I was given a Rx for dexamethasone for 3 days and then have Kytril and Metroclopamide on hand. i was never given anything for the acid reflux or acid build up. I am going to demand this should I continue. i still am going to take a few weeks off. Dwayne is away for 10 days and I can't go thru this again with him away.

[TSund]

Michele,

Get on the acid blocker NOW (or at least immediately upon restarting chemo! You can get Prilosec over the counter at the pharmacy. Take it daily.

TRS

PS We ordered the generic at http://www.purplediscount.com/ Worked great.

[TSund]

Wondering again...is it possible that the rash and headache and some pains that many get are from the steroids and WBC drugs and not the taxotere?


Ruth had a rash on her head that went away when we asked for the steroid dose to be lowered. (we could do this because her nausea was completely controlled by the emend plus whatever initially put in drip)

[Louise O'Brien]

Michelle:

I feel I have to add this for what it's worth since we're both from Canada - and since treatment for us as well as the drugs prescribed - is relatively consistent across the country.

Ondansetron is an anti-nausea medication and in Ontario, it is given along with dexamethasone for three days - two days prior to a chemo dose and one day following.

I don't understand (in fact I'm shocked) that anti-nausea medication wasn't prescribed for you along with dexamethasone and it's worth asking why. I know it's the standard at Princess Margaret hospital in Toronto which is the leading cancer treatment centre in the country. All the regional centres in Ontario follow PM's protocols.

Lack of that medication certainly explains some of the nausea you've been experiencing. I know there are anti-nausea drugs you can take after the fact - but taking this one in advance and prior to treatment could make a huge difference.

I know it's tough to be proactive when you're feeling so sick and crappy and it's frustrating for those of us on the sidelines who'd like nothing more than to pound on doors and insist that your medical team listen, pay attention and do something to help you. Hang in there.