Anyone starting Chemo in Feb?

Just lost the whole lengthy posting and I don't have the energy to recreate it. Good vibes going out to all of you at the bar this week. I hope my friends who are on a similar schedule to mine are starting to feel better. I am, despite the crummy weather here in the Lehigh Valley.

Marsha, tell me where to send the donation...I think you deserve awesome boobs. As for a BNO, I need one of those right now!

A special hug for Tink. A baby girl...such a blessing (I have two daughters -- 15 and 17 now).

Quote:

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I just attach two booby pins from the wig to this strip and the wig is really secure.

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Laughing at Lynne's typo...sorry my sense of humor sucks.

Twink, LOL....freudian slip?

Carynn, thinking of you for tomorrow...
Big hugs,
CatherineH

Terry - I don't recall who does and doesn't have insurance anymore but if you do, by law they have to cover procedures to the non-diseased breast to produce symmetry, be it reduction, augmentation, lift, etc.

Carynn - Good luck today (and anyone else - haven't paid much attention to the bar list recently).

Karen - congrats, you're done! Hopefully you'll feel up to at least a little celebration.

Twink - maybe we should put together a BNO for the PA gals when we get finished with this crap.

Off to work. Hugs to all!
Phyl

Ahhhhhh......a normal night at BNO with all my girls. Laughter, good food, and special hugs. My wish for all of you "Broads" is to have the same kind of friendships with a special group of gals who look at you the same and yet different. The difference? Written all over their faces "Thank God you are alive". There are 5 of us, we meet EVERY Wednesday and all our hubbys get along too. 5 special friends, 5 special couples, I am so lucky. One of the guys said to me last night "As beautiful as your hair was, you are just as beautiful without it." I almost cried. OK on to another subject cause I could cry just trying to write about it!

Karen, I wish I could hop on a plane and hug you till you feel better. And about the taxol, here is hoping YOU are the one who has no side effects at all! I swear after what you have been through, I'd take extra bone pain if it meant you had none.

Alyson, wow, hope you are better. Every time we go a while without hearing from someone I worry they are in the hospital! We were all told I guess that could happen with the counts leaving us so vunerable.

Terry, selfish and shallow? Don't be silly. We all want our arms to be the same length, our legs the same, etc etc why should we not want our breast to be the same? I think that is perfectly normal.

Have you guys noticed the SE are running almost exactly the same timing for all? You can go back and read and know right where all the concerns are. Food is now the biggy for everyone it seems. So odd to not taste it! Thanks to Catherine for at least describing what something is suppose to taste like. I have a huge imagination and was able to at least imagine the taste she described! LOL

Twink, you are as sweet as you are funny. Laughing at booby pin.

SammieKay, laughing at stud finder.

Sybil, know the foggy brain well. Looked for the remote control not long ago for 10 minutes. It was in my hand.

Carynn, girl, how is it going? #4 kick your butt today? The constant counts up and down are probably why we are all feeling so lousy.

Palms, let us hear from you, we all remember the first one very well.

Have a great day gals.............XOXO Marsha

Hillary's question... Are you getting just the test with just the frequent mutations checked or are they checking everything? The first test -- looking for the brca1/brca2 "hotspots" only takes a couple of weeks. The second test -- looking for anything different about your brca1/2 genes -- takes several weeks.

This genetic testing definatly will take several weeks so must be the second one you are talking about? She said if I have the gene then it will up my chances of reaccurance by 50-65% despite any treatments I am having now and I would need a masectomy on down the road.

Terry I had two lumpectomies, one done in Nov 06 by one surgeon and another done in January 07 with the surgeon I have now. My right breast is perkier than the left! I had twice as much taken out of my right and the scar is from the nipple to the top of the breast so I guess it pulled it up somehow. Its pretty noticable without a bra on as my 44D puppies hang low these days. I always wondered if the mammograms were pulling them lower and lower or if its just old age (51 or both)!

OMG - LOL! Extreme Boob Makeover!

omg! I am at work and killing some time before I go to LGFB class at 6:00...thought I would check in with you all to see what has been going on today....you guys are too much! I love the fund raising ideas! I see you have been having way too much fun today and while I was working!
You are too much. Sitting at my desk laughing to myself. Glad no one else is here to see me!
Where are the other PA girls?? I am in Blair County - Altoona area.
So...Terry, Hillary, Phyl, Twink....anyone else??
Got to go....love you all!

OK, Twink, Marsha, someone -- what is a BNO? I'm dying of curiousity!

Twink, Terry, Phyl -- yes, I'm also a PA girl. I live in the Philly surburbs. In fact, if any of you are ever coming to Philly, let me know. I'm only a 20 minute ride from Center City.

Now Marsha -- why do you think that only Twink, Vegas and Carynn would get a kick our of your friend Rick's idea. I think that you should combine that with the auction for naming rights of your new boobs!

Alyson -- Glad you're doing better! That must have been scary to have to go to hospital. It is a lesson for all of us -- don't wait to call the onc if we have wierd symptoms. That's what they are paid for! But, the story about the wig and the nurse is hillarious!

Sybil -- I also use the wig gripper. I got mine from ACS through their tlc catalog. I like buying things from them because I figure that any profit will be used well.

Karen -- I really do hope that you have an easier time of taxol. I hear you about the hair, but I'm having a different problem. When my hair started falling out, my hairdresser buzzed rather than shaved, because he was worried that my scalp was too sensitive. Eventually all the black hairs fell out, but I'm left with white fuzz all over my head. It's not very attractive!

Catherine -- I thought of you and your healthy meals as I ate my well-balanced dinner, cooked by a neighbor! I can tell that I'm feeling better when my stomach can cope with watching the cooking programs, but it still hasn't translated into wanting to cook!

Hope that Carynn, Karen, Sybil, Palms, and SammieKay and doing OK after their bar sessions. I saw someone on another thread call hers a "chemopolitan"!

Lots of love,
Hillary

Hi everyone,
Sorry I haven't been in touch lately. Had first Taxol on Tuesday with no allergic reaction. They had me take 5 decadron the night before, morning of, but then changed their minds and did not give it to me in the IV, just aloxi. I think because people complain about the side effects so much. Decadron for 3 days after also. The only other thing I'm taking is the glutamine powder for bone/joint aches but I've had very little so far and hope it continues. No nausea either. So, all in all, feeling pretty good except the decadron makes me weepy and not sleepy.

Looking for a past post:
I'm not sure where I saw a post a few weeks ago (on this board or another - maybe 4Sybil) but I can't seem to find it anywhere. Now that I'm getting closer to the end of tx, I have to revisit the Her2 borderline test yet once again. Still can't believe this issue is not resolved. Anyway, someone had mentioned (probably a few weeks or so ago) that they had gone to at least two oncs that gave numbers that they considered negative when borderline positive. I remember being happy to read it but wanted to go back to the post again but can't for the life of me find it. If anyone knows, I'd really appreciate it.

Hope everyone is feeling well this week.

Linnie

OK girls....just checking in. I am dragging big time and never even made it to the bar - go figure. I awoke on chemo day with a virus - swollen glands and felt like a freight train had run over me! Called onc and was told to I had to hold off. I am still feeling lousy but praying my immunity will bump back up quickly so I can get this started and behind me! Hope you all are feeling good.

Happy Easter

Carynn, how did it go today?? Hope to hear from you in the morning to report that you are faring OK...

Vegas, Twink, Marsha... what a fun group!!! I wish Marsha a great outcome from these boob-storming sessions...
You all have sweet dreams,
Hugs,
CatherineH

Palms - so sorry to hear about your delay. How frustrating.

Pat - I assume you're on the bubble for the 16th, not the 15th?

Linnie - great to finally hear from you. We were all wondering. Thank you so much for sharing your first Taxol experience. Sounds pretty harmless so far.

Twink, Terry, Hillary and Sandy - I think we're working on a plan. Not sure where Sandy's from, but at least 3 of you are in the same quadrant of the state. I get to Philly 3 or 4 times a year for business but anywhere between Allentown and Philly will be no problem for me anytime. Terry's the one who's gonna have quite a drive.

Vegas - sure hope to see ya at the bar Monday. Could use someone to talk to. I've been accustomed to spending a couple hours at the center - this one will be substantially longer.

I found some info on our taste issues on Scott Hamilton's chemocare website. I've copied it here - hope I'm not violating any website policies (I have seen other copy/paste text) - it really does answer some questions.

Taste Changes
There are 4 main types of taste: Sweet, sour, bitter, and salt. Sense of taste is primarily located on the tongue. Each type of taste is located within taste buds on different sections of the tongue. As you chew your food, it mixes with saliva and as it comes in contact with the taste buds, messages are sent to the brain regarding your sense of taste. The brain processes the messages and helps you identify different tastes.

What are taste changes?

Taste changes are common during chemotherapy. The exact reason for taste changes is not clear, although it is thought that it is a result of the damage to the cells in the oral cavity, which are especially sensitive to chemotherapy.
About 50% of patients getting chemotherapy experience taste changes.
Drugs most commonly associated with taste changes include carboplatin, cisplatin, cyclophosphamide, dacarbazine, dactinomycin, doxorubicin, 5-fluorouracil, levamisole, mechlorethamine, methotrexate, paclitaxel, and vincristine.
Most people report taste changes involving a lower threshold for bitter tastes and a higher threshold for sweet tastes.
Some drugs also produce a metal taste during the actual intravenous infusion. These include nitrogen mustard, vincristine, cisplatin, and cyclophosphamide.
In addition, the association between taste of food and chemotheraphy may lead to taste changes. Chemotherapy loss of sense of taste can occur purely from the association of an experience of nausea and vomiting with chemotherapy.
Taste changes may occur during therapy and last for hours, days, weeks, or even months after chemotherapy.
Taste changes are also common in people taking biologic therapies such as interleukin-2, and interferons. Most people report taste changes involving a decreased threshold for spicy foods, describing most food as bland, bitter, like chemicals or medicine. Both the cause and duration of taste changes associated with biologic therapy is unclear.
Things you can do to manage taste changes:

Maintain good oral hygiene - brush your teeth before and after each meal.
Choose and prepare foods that look and smell good to you.
Eat small, frequent meals.
Do not eat 1-2 hours before chemotherapy and up to 3 hours after therapy.
Use plastic utensils if food tastes like metal.
Eat mints (or sugar-free mints), chew gum (or sugar-free gum) or chew ice to mask the bitter or metallic taste.
Substitute poultry, eggs, fish, peanut butter, beans and dairy products for red meats.
Marinate meats in sweet fruit juices, wines, salad dressing, barbeque sauce, or sweet and sour sauces.
Flavor foods with herbs, spices, sugar, lemon, and tasty sauces.
Chilled or frozen food may be more acceptable than warm or hot food.
Try tart foods such as oranges or lemonade (this may be painful if mouth sores are present).
Avoid cigarette smoking.
Eliminate bad odors.
Eat in pleasant surroundings to better manage taste changes.
Increase your fluid intake.
There is no one magic solution for taste changes that suits everyone. Finding foods that taste appealing may be a process of trial and error. Some people who experience taste changes avoid their favorite foods to prevent the possibility of spoiling them for the future.

There are no medications that address taste changes. However, some studies have suggested that deficiencies in zinc, copper, nickel, niacin and vitamin A may contribute to taste changes. Do not take more than 100% of the recommended daily allowance. Remember, you should discuss taking vitamins or any other "remedies" with your doctor before you begin.

When to call your health care provider about taste changes:

If your taste changes have caused you to stop eating and you have lost 5 or more pounds, you should inform your health care provider.
Note: We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website about taste changes and other medical conditions is meant to be helpful and educational, but is not a substitute for medical advice.

Hugs to all today and wishes for a happy and uneventful Easter weekend.

Phyl

Phyl -- thanks for the comprehensive post on the taste issue. I have to say that my problem is not as bad as some of you are describing. At this point though I feel that the entire inside of my mouth, especially my palate and gums are 'scarred'...like the membrane has been burned and healed.

Terry -- I didn't realize the LGFB program was ongoing. I thought it was a 'one-shot' deal. I registered to attend the April 16th one here locally and will meet Sandy there (she's in Lehigh Co. too). As for the PA BNO, July timeframe sounds like it might work for me....chemo done at the end of May, surgery to follow (and rads ??). Let's plan on it...we can start by selecting a location -- I'm open to almost anything. Philly sounds like fun ...gets me out of the small town for a night.

Marsha -- this plan is starting to take shape. With a name like The Boobalicious Fundraiser (LOL Carynn) who'll be able to resist? Hell, I want to participate!

Linnie -- I was browsing the earlier posts in this forum (Feb Chemo...) and Marsha and a couple of other women did a pretty good job of explaining the HER tests and results. Go back to pages 1 - 3 I think you'll find your answer.

Carynn -- Go girl! I do think work is a good distraction personally. Glad to see it works for you. Hope you fare well over the next few days. Seems to take me about 5 or 6 days to get back to normal. This whole Taxol / Taxotere decision has me in a bit of a tizzy...onc says Taxotere causes fewer SEs (during infusion and following) and the material I've found online seems to support that. He says they're both equally effective. Why wouldn't one chose to do Taxotere if that's the case? Argh!

Palms -- What a drag! It's so much better to get that first one behind you. I hope you're feeling better soon and can get the treatment started.

C'mon Catherine and Vegas and others...you can join the 'fun group' too...you've already met a few initiation criteria (smiling). Laughing at "boob-storming" and "boobs or bust"...hahahah

It's Easter weekend, I forgot to buy any sweets for the kids or anything for Easter dinner so I guess I'll be braving the grocery store and mall today. Blech. I just feel like sitting here on my a** all day (although it is getting sore from sitting so much).

I amused myself this morning by composing a sonnet for nose hairs...I thought I'd share it with you here...

A Sonnet for Olfactory Cilia

Let me talk of olfact’ry cilia

Those little hair-like cells which line your nose

To fill a role you may call trivial

By keeping at bay all ilk of nasty foes

~ * ~

Filtering bugs and dust and dirt all day

Prevent the snot from dripping unconstrained

Beating strong to draw mucous up and away

Saved the embarrassment by flow contained

~ * ~

Soft humidity of nasal passages

Maintained with trapped moisture from our air

Become painful dry openings ravaged

As barren as those distant deserts sere

~ * ~

What of all these indignities endured?

Perhaps grow stronger or at least inured.

~ * ~



(Iambic pentameter a little off...but, it's work in progress)

Hugs all around.