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My accupuncturist said to me the first time I met her, "What are your hobbies?" I told her I do alot of theatre. "An Actor" I said yes and that I had just directed my first show, The Odd Couple. She said OK here is your positive energy thought for the time you are getting your treatment. You are the lead character in a show about your life. You are also the director of this show and decide the mood and feel. You are the lighting designer who sets the colors of your life. You are the sound man and you determine what you hear and imagine. You are the producer, pulling your team together. And finally you are the writer of this play. You determine the outcome.
I have not been able to get that out of my mind. I wanted to put it in all of your minds.
I'm writing a play.......got a complete outline done and actually starting to write dialogue. I wrote the end first. Here it is summed up:
Five years in the future, BC girl is at a tropical resort for couples with 6 friends. This is a 5th anniversary in two ways. One for the yearly trip and two for BC girl who is a 5 year bc survivor. A man comes out on the beach with the group. He is wearing a tuxedo and very handsome. Raggae music comes up and BC Girl and "NED" start to dance and laugh. Friends starting talking to hubby about her dating NED. Hubby doesn't mind, hubby wants NED to stay with them till they are old and gray. Screen comes down and the words say: "N" "E" "D" NO EVIDENCE of DISEASE. Blackout.
Hope everyone has a peaceful night. Love, Marsha0 -
Jen, sounds like it was a pretty good day. The closer I get to next Thursday, the closer I'm reading everybody's posts;)
Welcome to all of the new cruisers. I've added your names to the ships manifest:) If I've missed anyone, somebody holler!
I have a question...everyone is talking about the toothpaste and mouthwash..I asked my friend who's been thru chemo if he used it and he said no. So, what is the benefit supposed to be?
Thanks all. Smooth sailing!
Carynn0 -
When I went to the 1st chemo today, I was told that I was doing dose dense - I thought I was doing every three weeks. I can change the course, but a little t'd at my onc not telling me this or running this by me. Now I need to decide if I will do dose dense b/c I need to get the Nulestra shot tomorrow ($3500 each) I just don't know if there is a substatial benefit for doing dd or every 3 weeks.
anyone got feedback?
Thanks0 -
Hi Caryn -- Thanks for all the updates on the manifests. What position does this make you on our cruise -- the purser?
I've been using the Biotene toothpaste and mouthwash. It's supposed to help prevent mouth sores. Because I have a tendency to get them anyways, I thought that this would be a good prophylatic treatment. Because I'm eating several small meals to ward off nauseau, I try to brush lightly or swish after each mini-meal. So far, day 3, I'm doing OK.
I've also heard that gargling with salt water works.
-- Hillary0 -
Horsegal...I have 3 horses now and ride western. Two docs told me I need to give them up as its alot of physical work taking care of them. We have to physically roll our round bales out by hand as we don't have a tractor. I have a farmer a block over from me that brings 8 bales over at a time as I need it during the winter. Right now my son in law is pushing the hay out for us as my hubby is still unable to with his leg broken from the motorcycle accident in June.I think son in law is amazed I could even push the hay out as he struggles to do it and he's in his 30s! Hubby has outpatient surgery next week to fix the plate on his smaller bone as its broken. Found out this was why he had more pain and swelling since just before xmas. The bone is broke too. His larger bone looks great despite 4 spiral breaks it endured, a pressure sore developed in the hospital is another thing being worked on by a wound doc.
Anyway I had a little Quarter Horse(former parade horse) named Christi, I traded with a neighbor, her for a mini horse named Blaze for my only grandaughter to enjoy. We also have Flashy a Saddlebred Pinto who lost her left eye due to cancer and Chester a rescued Thorogughbred. Just used them for pleasure riding. I've had them for 12 years so am happy I had them that long. I had horses as a kid up till I was married at 20.My parents belonged to a Rodeo club when I was a kid. We had a little horse named Taffy but I don't remember much about her except the day she died. I had a shetland pony named Chester that pulled a cart, later had a little black Morgan horse named Onyx then a grade horse named Sparky who had some spirit, he even bucked me off once and I did a flip head over heels and ended up in front of his face!I think we were both surprised and in shock but not hurt! I just recently found my best girlfriend via an internet search whom I haven't heard from in about 25 years, who rode her horse with me that day and saw it and confirmed the flip! Waited 20 years until I could have horses again. I'm sad to have to give up my big furry babies but my health has to come first in this situation. We just can't afford to hire someone or buy a tractor. I'm bad about making sure they are taken care of and would probably feel guilty enough to push hay out if someone couldn't help me get them fed thus a reason to get rid of em as I am stubborn about taking care of my babies! Mom even said she remembers all those winters years ago in Illinois I would carry several buckets of water to the barn in deep snow or ice. My older brother had that job and he didn't always do it so I got pissed and took it over.
May have to talk my hubby into getting a second pomeranian to make up for missing the horses.We had two poms but the red one died of old age few years ago.
Here's a picture of my furry babies...I also have 5 cockatails in a large cage.
Left to right
top row Lady Bar Christi, Flashy Sox
Chester, Blaze
Honeybear, Holly0 -
Oh I forgot...hubby was given a mask so was able to sit nearby me during chemo. Man I tell ya this chemo stuff has me really chatty just like when I used to drink too much beer years ago!!! Don't do alcohol but once a year since we don't believe in drinking and driving a bike or car.
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Thanks for the update Hillary! I've never had a cold sore, or mouth sore, but I might just pick up the biotene to keep on hand. And BTW, I'd rather be Julie than Gopher...
You can tell that I've never been on a real cruise as my only reference is the Love Boat!
Wild, there's gotta be a way around giving up your precious furry babies! I guess none of us know how we'll feel by the last treatment, but since it's temporary, maybe your hubby and neighbors can come up with a temporary fix. I'll keep my fingers crossed for ya:)
Carynn0 -
First tea party was today and it went well.The premed Ivs took 30 min with decadron and aloxi.-no problems. Took an emend while the dr was talking with me. Pushed the adriamycin. It was in three syringes and it probably took her 15-20 min. The nurse talked so much I am not sure how much time really went my. I think she was keeping my mind off of things. Then the cytoxan ran in for 30 min.-no problems while there other than I got chills right after the adria that went away.
Went home and fell asleep immediately for 2 hours. Then went to dinner with all my family. It was nice but did not eat much. Felt burpy and queazy 1/2 way through and took a phenergan (allergic to compazine) and it went away quickly. The red pee is already gone but then I feel like I am drowning in liquids. Port worked fine and it feel MUCH better without the needle.
I am just very, very, tired and at times feel a bit off and nauseous but it comes and goes. And I was worried the decadron would make me hyper (it has in the past, did not sleep for four days).
So like everyone else it was pretty uneventful.
Jen-I would wait a bit. Do you have someone who could help you? This is only temporary it would be bad to lose a special animal. I rode, trained and showed horses all through me childhood and up. My dream has been when my son graduates next year to buy a place in the country and buy a horse!!!! Your pix are great.
Carynn, yea! you are still with us but then we would not let you leave anyway!
Thanks for all your support!!!
Karen0 -
Hello everybody. Glad to read that for most the first round went OK. You talk about serynges of adriamicyn: I had a bag (presented to me first with a little paper umbrella like they use for "real" cocktails...), and it went through the drip. The cytoxan was run very slow to avoid the stuffy nose and headaches, and seems to have worked. Day 3 for me today: got up pretty fresh, went with a friend and Toby (my dog) for a nice walk in fresh snow again. Felt more tired and spaced out this afternoon, the neulasta effect maybe, had a few more aches but a tylenol took care of it. Just not much energy and a bit queazy, so I'll have another Ativan before going to bed. I hope not to have to take the Kytril tomorrow... I rinse my mouth several times a day with baking soda+sea salt diluted in water... hope this will work... Was not tired enough to nap during the day, but had a very quiet afternoon reading with a dog on each side... and my DH close by preparing his physics classes for next week. I can appreciate what a lot of you are going through because of having to go to work no matter what. I wish you all tons of energy to cope with this chemo ride... Just think of all these nasty BC cells being blown up, and drowned in the orange stuff...
Have all a restful night (decadron did not do a thing to me, made me turn red the next day, as I found out today, but that's it).
Love and hugs to all (special thoughts to Jan and her beautiful horses).0 -
Steph-TampaChick....might not need to be alarmed. I just did a Dose Dense search on this site. DD can apply to a couple different therapies. My wife is doing DD on a three week cycle, AC+T, then neulasta next day. Hope this helps.
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Lorilat,
I was originally told I was triple neg(diag 12/22) and just found out this week that I am also ER-PR+HER-. I didn't know this was so rare. I was just getting used to being triple neg. and now am told that I will have to use Arimidex in addition to chemo and rad. Let's keep in touch. I live in Ventura County, CA. I start chemo on 2/20.0 -
Hey to all Feb Cruisers,
Day 7 of first A/C X4!!! Haven't had any realy problems except nausea day 1, and feeling tired. Has been cold here in south Texas, which is strange for us. So I've been hibernating under the covers and eating.
My hgb was low and had to take a procrit shot today. I admit I haven't been taking my iron like I should due to constipation. But, have learned my lesson because the shot hurt more than takng a stool softner for constipation for sure!!!!!
Lesson learned.....Next round scheduled for March 1. Am a little anxious about it because it's really taken me a week to feel back to "pretty much" normal, and I need to get back to work second week March.
Eating everything in sight, which I had not planned to do. Oh well. Guess more exercise for me
when the sun comes out!!!!
Hugs and best wishes to everyone.
My big fifty birthday is Feb 24, so please send any condolences anyone has to offer LOL!!!!!
Hugs and best wishes to everyone.... Tracy in South Texas0 -
Just doing my nightly check in. Glad to hear everyone is doing fairly well. I love the cruise thing, but dont think i want to purchase these tickets ever again, can definately think of a better vacation. I also found out I will be taking AC+T. Nurse told me the Adrimiacin she calls the red devil cause it will give you every side effect you imagine and day 14 all my hair will fall out. Told me day 7-10 to buzz it off, its easier. The doctor had me all relaxed, said meed my nurse, and she scared the crap out of me. Then I read the Taxol will make you have joint/bone pain. Now after being all set and ready for this I am scared to death again.
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Am still wide awake, I asked if the steroid given was the one that keeps ya awake at night and she said yup. I got a little queesy after a gentle supper but jumped on it with the other nausea med and it was gone quickly. Same thing with two headaches using tylenol. The key to this thing seems to be soon as you feel it, hit it quick rather than wait and see if it goes away or gets worse.
All my neighbors but one are nearly old enough to be my parents and the one I trust most with horses has a bad back and it looks like his daughter's hubby is doing alot more for his animals these days. Recently these two were in my pasture getting his horses back into theirs due to broken wire fence they both commented on they wished he would get rid of the two horses because they are such a pain in the butt to care for. So I know they wouldn't be of any help either! I had unhooked the one horse of his leg from the lower wire a bunch of times as the goofball yearling did it on purpose. I know because I happened to see him do it later on. He keeps an eye on my horses as it is, one time I went out there to do something and found one of my horses had that goopy yellow med on some wire cuts he had on his chest. I knew it was my neighbor who'd done it. Years ago he used to care for Loretta Lynn's hubby Mooney's traveling rodeo stock. He also cares for my horses any time we take a vacation if I can't get one of our kids to do it. My daughter is so busy with work and college(radiology tech..ironic huh? shes had some very interesting xrays and such for her classes from the both of us
) and my son in law a real city slicker has been a dear doing it all this winter that I can't really burden him with it just to keep my horses. Boy he's gonna be really "happy" to see he has 10 more bales and trips out here to do yet this winter. Our youngest who just went to boot camp was living 50 miles away from here and had lot of vehicle problems so couldn't help this winter. He did help last winter with the horses while he was still livng here, I had knee surgery so I couldn't do anything then. I'm the one that usually takes care of everything with the horses including mowing the pasture with a riding mower (8 hours of mowing!) especially since I don't work.
Taurie...I have so much trust in my female surgeon that anytime someone else scared me or told me something different from what she said I asked my female surgeon about what another medical person said and got a better answer that usually wasn't so scary.0 -
Good morning fellow chemo cruisers --
I need some advice from other AC patients -- what do you do about the odd taste in your mouth? Is there anything that gets rids of it or masks it? I know that some people have described it as metallic -- but that's not how I would describe it. Instead, it's just wierd.
-- thanks ...
-- Hillary0 -
Hi Linnie,
My stats sound more like yours as well. I'm stage 3A, so maybe it is the staging? Like you, I'm on 4 dd a/c then 4 taxol each every two weeks. Though I'm ER/PR+ so I will have another route to take afterwards.
Hope you are doing well.
Nancy0 -
Hi everyone...haven't been here much this week. First treatment was last Thursday and I went back to work on Tuesday. Have been feeling queasy, but nothing major. Just not myself. I am glad everyone is doing well it seems. I am having a port put in this afternoon, so am on a liquid diet until then. Picked up my wig last evening and hubby likes it...says it looks like my real hair. My next treatment in next Thursday and I am dreading them trying the Taxotere again, since I had 3 allergic reactions to it. But they gave me 50 mg of Decadron to take the night before to try and counteract that. So we will see. I am doing Carboplatin and Taxotere, so any idea when my hair might go on its merry way?? Hope everyone has a wonderful weekend and rests up,
Love0 -
Hi Sallyann,
I too had a bilat mast, mine was on 1/3. I elected to do the right, and am glad that I did. Did you have immediate reconstruction with expanders? If so, just wondering what your experience is so far.
Hope you're doing well.
Nancy0 -
Hi Wildabouthorses, Just getting caught up and hope you are doing well. For the port, I know that I had to get one because I had lymph nodes removed on the left side, and they say that to avoide lymphedema, that you shouldn't have blood or bp taken from that arm. I wanted to have veins left in my right arm after all of this, so the port was the best way to go.
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Hi Kimberly,
There are a few of us ER-,PR+'s at http://www.youngsurvival.org
If you haven't been there before, go there and look under the general heading of the bulletin board. search for "looking for others with ER- diagnosis"
It is a rare diagnosis, but it doesn't necessarily mean that we are doomed. However, there is not alot known about it. Most oncologists choose to treat it as they would triple negative when it comes to chemo decisions but then treat it as if it were ER+ when it comes to hormone treatment. Sometimes the hormone treatment works and sometimes it doesn't. No one seems to know why. ER-,PR+ may also be an indication of familial cancer, so genetic testing is recommended.
You should really check out the other bulletin board though.
I hope that I have been of some help. It is a strange situation to be in, and a little unnerving that we kind of have to fly through it blind.
Lori0 -
Marsha,
Which blood cells does the procrit work for? I went for bloodwoork yesterday, and my white count is too low and so is the red. For the red, they gave me aranesp. For the white count, I had Neulasta the day after chemo, but I guess it didn't work for me.
Hope you are doing well.
Nancy0 -
Hi,
thanks for the welcome.
You said your stats are the same as mine. Are you ER-,PR+ as well? If you are, there is another bulletin board that you should really check out. http://www.youngsurvival.org
under the general heading of the bulletin board search for "looking for other with ER- diagnosis". There are a few of us there that share this rare diagnosis.
have you started your chemo treatments yet? If you have,how was it? I am going for my first treatment next week and I am a bit nervous about it.
Lori0 -
For clarification
To increase white cell count Neupogen is short acting and not used much, Neulasta is long acting and would be what you receive to increase white count to prevent infection. If receiving dose dense I think it is standard to get it the day after becasue of the every two week. My understanding with every three week is that it is given if needed.
To increase red cell counts, Procrit is also the older form and aranesp is newer and will be what most receive if needed.
K0 -
Nancy the procrit is for the red, I am not getting the neulesta, too expensive for my blood (HAHA). Doing 5 days of another one starting with an N (nulopegen or something). I thought the nurse said procrit but i haven't gotten that. My blood work 7 days after chemo was all normal. And keeping my fingers crossed it stays that way! Marsha
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Hi Hillary,
I heard from someone else that lemon drop candy is good for helping with the bad taste in your mouth. I used them after my first treatment and they were about the best thing for my mouth. Other candy didn't help. Someone also said lemon juice in water. Have not tried that. Biotene mouth wash is helpful for mouth issues in general.
After about 8 days the taste came back to relatively normal in my mouth.
Jel0 -
Hi everyone,
Welcome to our group Nancy and Lori! Nancy, when did you have your first treatment?
Today is Day 11 and I feel really good except that I can't sleep thru the night. I mentioned this to the onc during followup visit on Tues and she gave me a low dose of Ambien but it didn't help. How weird is that? I feel like I'm on speed; the upside is that I keep losing weight even though I'm eating like crazy. Wow... an upside to BC.....
I think I'm one of the few people taking the neupogen shots but they seem to be working for me. I'm glad, though, that yesterday was my last day until next week. I'm back for Chemo #2 on Tuesday (dose dense every 2 weeks). Hope it goes as well s #1.
Karen, happy to hear that yesterday was good for you. Everyone in the group seems to be tolerating #1 well with just small, manageable side effects so far.
Linnie0 -
Is you insurance compeny paying for Nulestra?
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Wild -
Your pics of your pets were beautiful! Thank you so much for sharing! I feel soooo bad for you - feeling that you have to get rid of them!! I couldn't imagine really NOT having my horse. I also grew up with them - showing, training, even breeding - it took me until a few years ago to finally get back into them! I WILL NOT give them up now! My doc never said anything, either - she knows I have critters and will be moving soon to 100 acres - she never said a thing about working hard. I even brought it up, as I am (so far) not have the additional lymph node surgery as they would "like" me to have because of the issues related to the surgery and my lifestyle.
Fortunately, I now have my horse and donkey boarded, so I don't "have" to really do anything if I don't want to. I go every other day, however, and clean stalls and longe my horse to keep him in shape. I haven't had any issues with that. I will admit, though, that I am weaker now - and it frustrates the CRAP out of me!!!! I normally have no issues with carrying heavy water buckets or whatever, but lately - I feel it! And, I'm finding out if I don't lay down early afternoon and rest - by 6pm or 7pm - I kind of hit the wall and get so tired and grouchy!!!! My poor family! Yikes! So, will start resting for an hour early afternoon!
I can understand how much work is associated with having horses in your back yard with those huge round bales and water and everything = my heart goes out to you! Maybe you could keep just ONE - and use square bales to make it easier, so you don't have to quit horses entirely!
You mentioned your son just went to boot camp? What branch of service? Where stationed? My 23 yr old son is in the Army - stationed in Iraq until later this summer. Very hard especially now having him sooo far away!! AND in danger to boot!
Later - Jen0 -
I had the metallic mouth this morning so rinsed with the salt/baking soda mix and tha seemed to take away the metallic taste. The recipe they gave me for it is one tsp of salt, one tsp of baking soda mix into one quart of water. Jan
What do you suggest to eat to keep the wbc and rbc counts up?0 -
Hillary -
I am on Day 11 post #1 tx (AC). About Day 4 - I noticed when I was drinking my umpteenth glass of water that night, that all of a sudden it was funky tasting! I dumped out the water, got a new glass, and the same thing! I guess I would describe it kind of metalish, but like you said more weird. Then, after that - barely any taste at all now. No metallic - just nothing! I got up one morning craving hot chocolate and toast, and when I ate it - NOTHING! Ugh! I was so upset! But, since then - my imagination has helped! I now have to "remember" how whatever I'm eating tastes, then it seems to "feel" like I can taste it! The only place I taste with right now is the sides of my tongue, so I kind of mush my food around so I can savor it!!! This has got to be better than having it taste like metal I figure!
Just remember, this all goes away with the cancer when chemo is done! Hang in there! Jen
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