The Chemosabe March Cruise

Playwriter and Holly Thanks for the prompt reply. I spoke with my mom and she seems to be doing a little better.

Holly I am praying for you and my mom .... and anyone out there with diarrhea!

Healing hugs,
Maliha.

Things to Know

These are not cure all's for everyone but try them if you're having a problems and see if they work. If not contact your physician and get a remedy for your problem.

These are suggestions from all over the site not just mine or my opinions. They're just tips not curealls.

Fruits and Vegetables
Do not eat anything from the fresh fruit or produce section of your supermarket that has not been cooked. For example: No raw vegetables of any kind, salads, fruits etc. Do not eat salsa's dips etc that have not come from a jar or can. Potatoes, onions etc. etc. If you can't cook them, don't buy them to make. All veggies and fruit they prefer we eat from a can while doing Chemo. Don't go to the salad bar at Sizzler or any other place and eat what did not come out of a can or jar. Reason being is bacterial infections. We take anti-biotics for them usually for 7 days after chemo but just one infection can be detrimental to your health at this point and believe it or not you will be absolutely more prone to get one at this point than anytime before in your life. If you're not going to heed this warning then at least take all your fruits and wash them throughly and scrub with a vegetable brush and peel before eating. This will cut down your chances but I personally wouldn't take the risk right now. I'd rather eat from a can then get sick on top of being sick right now. It's your choice.

The advice you gave is excellent and everything you mentioned I've been told. Avoiding fresh fruits and veggies, especially from salad bars is very important on low WBC count days, which tend to begin around Days 5 - 6 on some treatment regimens. If the raw fruits and veggies are not thoroughly cleaned they can be very problematic for us. So I have been very careful to avoid them in those early days especially. Typically, veggies with thick skins such as oranges and bananas pose less of a risk.

My doctor said to only worry about fresh fruits and veggies if your white blood count was down. They say its lowest on days 10-14, so my intent was to avoid them during that time. However, she said it was not necessary unless your blood test indicated it was down.

Mouth Sores or Thrush
Don't forget your Biotene toothpaste and Mouthwash and use several times a day to cut down on getting mouth sores and keeping them at bay. Remember that Chemo will remove the saliva from your mouth. Sucking on popsicles throughout the day or homemade smoothies work well too. If you havn't already done so before Chemo try to get to the Dentist and have your teeth cleaned.

Fluids
Drink a minimum of 64oz of fluids daily. This can be in the form of water, popsicles, jello products etc. Don't think you have to bloat yourself on clear water itself.

Protein
I have been seeing a nutritionist and we met today to review my diet. She recommends that I eat 90 grams of protein a day during chemotherapy, as well as eat foods rich in antioxidants, and taking a multivitamin. She recommends shakes with about 25 g of protein, for those days when appetite diminishes. In addition, she told me that too much of a laxative is actually not good for the digestive tract, as it can become dependent on it. She says it is better to use a stool softner such as Colase, as it actually draws water into the small intestine. The key is definitely to drink 8 - 12 glasses of non-caffeinated, clear fluid per day to keep the system moving.


Metallic Taste in Mouth
For those with the metallic taste flavored waters seem to work better than clear water for that, but no food items have been mentioned here for that problem yet. Maybe some of you might have suggestions.

Breakdown of your Skin or Sores or Blisters
Chemo will break down your skin. Purchase bottles of Cytaphil lotion and not only use it on your hands, feet and elbows like we always do but your entire body after a bath from head to toe. This can avoid the dreaded rashes, itching, leg and arm blisters etc. Wal-Mart makes a generic version of the Cytaphil for about $5 a bottle as opposed to the $12-$15 normal price.

Anti-Nausea Meds and others
Remember to take your meds always as prescribed. Don't make the mistake of not taking something because you're feeling better and don't need them. Big Mistake! Expecially when it comes to the anti-nausea meds. You'll pay for that one believe me.

Loss of Appetite
If you feel like you don't have much of an appetite and are worried about your protein intake buy some Vanilla Whey and start downing some protein shakes. You must keep your protein intake up.

Exercise
Remember that cancer doesn't like exercise, so the more you can do even if it's just walk the better.
Finally, I was told that for those who have had axillary node dissections, it is important to continue to do your exercises regularly. I had stopped once I obtained a full range of motion, and lately my arm began to get sore again. So it needs to be stretched some more and I had to start doing them again.

Scar Tissue and Stretching
Massages are good for scar tissue and try to stretch out those underarm muscles a bit to help relieve some of the after effects of surgery and the removal pain of those lymph nodes being taken out. Those with nerve damage I can tell you this. I have a lot of it under and around my arm, but after 2 months already it is about 1/3 back already so there's a light at the end of the tunnel.

Pain and Sleep Meds
If pain meds and sleep aids aren't working keep complaining till you find something or the Dr. prescribes something that works. We're our own worst patients. As women we sit back and take it and wait till the next appt. 2 weeks from now. Get on that phone and call for a new script. No need to suffer if we don't have to.

Headaches or Sinus Headaches
Headaches or Sinus headache feelings from either Decadron or Cytoxin take 2-3 tylenol before Chemo. Keep taking them after if your headache continues. Ibuprofen works well too.
If that doesn't work try a pain pill. Other than that contact your Dr. for something stronger. Also you might want to have the Decadron or Cytoxin infused more slowly next time trying to avoid the effects a bit more.

Urinating
For those using the bathroom and only dribbling. I'm beginning to see that it's common here to go again once you stand. Maybe someone has suggestions on this one because I sure don't at present

Water Retention
Keep legs elevated as much as possible to prevent water retention.

Here's something good for that bad taste.....
Chocolate covered Altoids (strong and chocolatey!)

Diaharrea
Try Immodium - If that doesn't work talk to your Dr. about a script for something that does work.
Some of the posters on the Feb cruise, as well as the "getting ready for chemo" thread, recommend immodium.

Stomach Cramps
My info on side effects list stomach cramps as very, very serious. Contact your Dr. and go to the ER. This was what I was told upfront.


Urinary Tract Infections-or something that feels like it
My last chemo I had a terrible time with what I thought were urinary tract infections - that often couldn't be diagnosed. My onc would prescribe anit-biotics as a precaution - but usually couldn't get anything to 'grow' in the tests. Now I realize it was irriation from the chemo. The tip I saw was to keep a squirt bottle of water in the bathroom to cleanse the area after you are done urinating. In the middle of the night last night the old familiar burn began - so I ran and got a water bottle and had immediate relief. I have used it ever since and it has made a huge difference. A real Godsend. I am going to have to get a little bottle to have in my purse so I can use it when I am out and about!

Keeping blood counts up
Another tip for keeping blood counts up I read on another thread is to drink 100% concord grapejuice. Don't know if it works - but I bought a bottle - couldn't hurt!

If I see any other tips throughout other threads I feel important I'll pass them along as well.

Maybe we can do a copy and paste of this one along the way to keep referring back to it and you girls can add your advice on what you've found out as well.

Angel

Cynthia1962, CA, A/C, 3/19
whitecotton, 3/20
Rosebud1962, MI, 3/20
Misshapen. AC+T, 3/20
Paula37, 3/20
3boys4me, CA, 3/21
Playwriter (Terri), TX, A/C + T, start 3/22

Wishing you all good vibes on your start dates this week. I hope it will be smoothe sailing for you all.

Taurie,
I'm sending you a pm in regards to your insurance problems.

Oh, my. I AM the last to board. I sure hope you haven't drank all the magueritas before I get there and don't leave without me!

charlie

This will only make us stronger!!!

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Thanks for the well wishes. I have been so anxious to get started and worried about so much time elapsing, and now I am scared.

I don't wanna go get my port on Monday or start Chemo on Tuesday. I was hoping this was all just a bad dream and I would wake up before now.

Darn it.

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i feel THE SAME WAY. i got a phone call Thursday letting me know my start date, and i just crashed. it all became real to me. now it's a sense of dread i feel.

1stlite
Don't worry hun. This cruise is making plenty for us all believe me. And if you run short we'll just add a little more salt to the infusion area; you'll never notice the difference.

Cynthia1962
My biggest dread was having them access my port. I was petrified of that one. Didn't hurt a bit fortunately. You will do fine as long as you take your anti-nausea meds they way they are supposed to be taken. I ate some cream of chicken soup that evening with crackers just as a precaution but have eaten everything else I wanted since. I had a slight case of heart burn that started the first night but just added a regimine of pepcid ac and it's gone. Had a headache (not bad) for the past 3 days but even that's gone now. You'll do fine and be back on your feet in no time.

Here's my concern now
I just finished my Decadron and Zofran anti nausea meds tonight. Will start on compazine tomorrow. How are you that are taking the compazine doing? Also are you taking it all the time or just when you feel nauseated? I'm going to put mine in automatically at breakfast, lunch, dinner and bedtime. We'll see what happens and I'll let you know.
Angel

jeez our group is growing by leaps and bounds. This disease sucks!!

Since Im one of the front runners, I thought I would give a day to day experience so far. It hasn't been an uphill swing for me, every day brings different affects it seems. So don't be fooled thinking you've avoided any se, they come at different times.. I am taking taxatore, so I began taking L-glutimine powder and B6 vitamins 4 days before infussion and 5 days after. So far I have not had any numbness or tingling. Nor any bone or joint pain. 1st session of T/C was on 3/8.

3/8 day of infusion went fine (other than my crying fit). Thoroughly convinced myself I was going to die on the spot. During the T infusion I sucked on lemon drops and soaked my hands in ice. So far no metalic taste or any changes in my nails. During the C infusion I had them slow it way down to ward off any headaches or sinus issues. Worked, never had a headache. Made sure I drank and munched on something the entire infusion time.

3/9 felt great, took anti nausea meds around the clock. Stomach started to get gurgly and gassy but no nausea. Ate sick people food though, cream soups, crackers, popcycles, yogurt, sherbert and angel food cake.

3/10 Got the dreaded D, started taking Imodium, didn't work, had to take a 3 day regimen of Cipro to clear it up. I have stomach issues anyway and Cipro has been a life saver in the past. Still on anti nausea around the clock and sick people food.

3/11 still having D but getting better. Still on the Cipro and still having to take anti nausea drugs around the clock. Still on the sick people food afraid to eat anything else.

3/12 stomach finally is back to normal, had a fairly decent day. Started venturing out with more normal foods, still on anti nausea drugs.

3/13 stomach fine now. Have to only take anti nuasea drugs in the morning. Would wake up with that morning sickness feeling. Rest of the day was fine, eating normal foods.

3/14 Started running a persistant fever of 100 plus. Had to begin alternating Tylenol and Aleve every 4 hours to keep it under control. Also the back of my mouth has sores on it, hurts..

3/15 went for blood check, now know why constant fever, wbc dropped to 1.7. Had to begin taking Lequin (sp), heavy duty antibiotic. And magic mouthwash, I now have thrush. Felt like crap all day. Still had to alter the Tylenol and Aleve to keep fever down. Was put on infection mode, no crowds, no raw vegs or fruits, wash hands constantly.

3/16 Fever broke during the night. Felt much better all day.

3/17 Fever now under control, antibiotic must be working. For the first time, feeling fatiqued. Did manage to go grocery shopping early in the morning to avoid crowds.

Hope this gives all the newbies an idea on what to expect. Everyone is different and experience won't be the same. Its been a hell of a ride so far, but nothing earth shattering, it is doable.

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I did have some fun in the hospital waiting for the port to be put in. My bf would reach under my blankets and try to get the heart monitor to beep faster...LOL. The things guys do to make ya feel better!

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thanks for the laugh!

lindaDK
Thanks so much for the day to day update. It really does help for those who don't know what they're facing yet. I swear by Magic Mouthwash or Biotene products. I recommend everyone use them continously and don't wait until the Mouth Sores or Thrush show up. Glad you got some. Too bad about the stomach problems and fever. Just glad it finally broke for you. Never heard about the nail things with the ice water. I know they can come off but I couldn't imagine sitting there for hours with my toes and fingers in some icewater. The things we do to stay beautiful huh?.....lol

playwriter
Glad you had them slow the C infusion way down to ward off the headache symptoms. I was lucky in that was the only thing I had after chemo other than some heartburn which pepcid ac took care of immediately. Headache was slight here but enough just to be annoying. It's gone now but I'll slow my infusion down next time and take the Tylenol before infusion like recommended.

maxgirl
I would never curse you sweetie. You seem to be having such a hard time with the diaharrea and sickness right now all I would ever want for you is a great Big Hug! As far as the compazine the bottle said every 6 hours but didn't state as needed. That's why I kind of questioned it. Hey as for it being a pretty powerful drug, who the hell cares at this point......lol I am going to automatically take them through the weekend then consult the Dr. on Monday and see what they say. I just didn't want to wait and see if I got sick if I could avoid it altogether if ya know what I mean........lol
Angel

Hello fellow cruisers!! I haven't posted in a while but I'm still aboard. I'm not talented like the rest of you and able to reply to each post. I've been feeling pretty good lately. Woke up this morning with allegy problems. Pollen is really bad here. Spent most of the day outside yesterday and now I'm paying for it. I enjoy reading everyone's post and am finding great info. It's good to know we are not alone with this bc thing. Has anyone started losing their hair? Day 14 will be Friday which is when I receive my 2nd treatment. Hang in their girls, this will be a cruise to remember!! Hugs to all.

Anyone doing any of the T's taxol or taxotere, one of the pleasantries is the possibility of your nails turning black and then loosing them. Someone I think on the Jan cruise recommended soaking your nails in ice during the T. I only did my finger nails , couldnt quite figure out how to stick my toes in cups of ice water..

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I kind of figured that's why the appt was made but wasn't sure. Don't worry about the 6 week post-op being 6 weeks or more out from surgery. It doesn't matter when it's starts to kill those cancer cells as long as it does. I was more than 6 weeks out of post surgery before I could start mine....(long story) They just don't have any test scores for it because most people don't wait that's all. Just make sure that if you don't start by then you at least get your port flushed. That has to be done by the 6th week no matter wether you start then or not.

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Thanks Angleflight, that makes me feel much better. I don't have a port, as the onc said she didn't think I needed one. However after reading here I may talk to her again about one. I'll be able to relax a little now about the six weeks. THANK YOU

Angel -- Good point about the Compezine. Compared with the chemo drugs, it's probably like a sugar cube for side effects.

Just to clarify, I wasn't the one with the diarrhea problems. Went the other way a couple of days, but I got that under control quickly. But thanks for the sympathy anyway -- I'll use it in other places I need it.

Jill -- I figure that a week from now, or less, my hair will be gone, and it's killing me. I feel like I'm going to have a sign across my forehead that says "CHEMO PATIENT." Yes, there are bigger problems to worry about, but I think I'll take this week to fixate on cosmetic issues.

So glad to see someone else is going proactive on the hair loss. I have actually started planning a pizza and buzz party. It should be fun and everyone can play! I just couldn't even imagine waking to a pillow full of clumps!

Welcome aboard Jeanne!!

I had a left mastectomy on Feb 7, also! I've also been tested to pieces and ready to start chemo on Tuesday!

I'm getting the DD AC every 2 weeks x4 and then DD Taxol every 2 weeks x4, as well as weekly injections of Herceptin that start with the Taxol.

We have lots of great gals who are leading the way and we get the advantage of lots of good tips and hugs and prayers, too!

Sorry you have to be joining us, but glad to have you anyway!

Miss S