Starting Chemo in JAN 2007
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Good morning ladies,
I have a feeling the doctoring won't stop, either. It's the "new normal" for us.
Horsegal, I've tried Tylenol PM which helps sometimes but not always. I think I may ask for a prescription of whatever it was someone mentioned yesterday (must go back and look) that is non-addicting. I do sometimes get relief if I take Lorazepam for nausea right before bed, I've managed to have 2 nights with 5-hour sleep marathons and then be able to go back to sleep again.
I did get the news on my EKG, and all results were good and positive. Even after all the AC, Cytoxan and Taxol the ol' ticker is still pumping perfectly, so evidently my chest pains are coming from the bone pain. A bone density test is next on their list for me. But at least I have a full clearance for Herceptin.
Yesterday was one of those hectic days when I was barely able to walk or be cognizant, yet I had roofers coming to make bids, youngest man-child son buzzing around and getting ready to go to Chicago for the weekend, dh misplacing something he needed to pay a bill and driving me crazy going thru wastebaskets, etc. ...I'm SO glad it's the weekend, and that I have the house to myself today. Neuropathy is not as bad as last time but I'm still tottering. Lynn your Florida trip sounds like a great idea.
Boston gals, we will be thinking of you and waiting for the report! - Skye -
Mary, I had a couple of monster cold sores while on chemo without getting a cold. The Abreva barely helped but was better than nothing. I do think stress brings those ugly puppies on and our immune systems are not in their usual good fighting form. Hope it heals for you. - Skye
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Mer, did the chemo shrink your original tumor? If so how much? I don't think a cold sore would stop your surgery. Let me know if you need someone to come hold your hand.
Here's another impt bit of advice: make sure you have a family member who can spend the night in the hospital with you the first night to take care of you. The nurses are overloaded with patients and won't be able to spend as much time with you as they should. It really helps to have someone there to adjust your pillows, help with your meds, get you to the bathroom, etc., etc. You'll do just fine.
Meds..we should be talking about meds now because they are a *BIG* issue. For ex, ativans are hard to get off of, and I don't think most of you want to be permanent addicts. I never took too many of them...I think about 40 total including the daily diminishing dose to get off, but I am now completely off . I talk milk & aspirin to sleep. The rads also help with sleep, because they make you sleepy.
For all you gals with hot flashes..Prozac is super if you can take it. It works. And Effexor is supposed to work too; you can take Effexor at very low dose just for hot flashes.
Mizsissy -
Horsegal, that must be so heart wrenching to have a son in Iraq!!! Can you post a picture of him?!
IowaCindy, good luck with your Effexor and Tamo. I will be *VERY* interested in hearing how you are doing as I am still trying to decide on meds.
Nancy, you are going to be in the same dilemma I am about what to take with Tamo. Have you decided yet?
Lynn, how about some pix from Florida?!!!
Mizsissy -
Skye, Isn't lozepam the same as antivan? I take that every night to help me sleep and keep away the night frights. I figure I will worry about getting off them when I am done with chemo. I have ten more taxols and just need the assurance that I will sleep. I have always had trouble with nightmares.
This taxol went fine and my husband is doing the errands for me, so I should have an easy weekend. I am still working fulltime but have found that I don't have the energy to keep up with everything else, so he is pitching in. Hopefully this will help with fatigue.
Funny issue; my kids are grown and out of town. when I see them I leave the wig on, bra, prosthesis. But our son will be home for ten days in May and our girls and son in law are coming over memorial day. I love to cook and barbeque. Should I gather my courage and wear hats so I can cook? Not even my husband has seen me bald, so that is just not something I am up to, but maybe a hat??? I am so private, it's hard for me. I wear eye makeup so the eyebrows and lashes aren't so obvious, but without the wig I really look ill.
Melia -
Mary - just want to second Mizsissy's advice about having someone stay in the hospital overnight - I would have shriveled up from neglect otherwise. It's a really good idea. Also - when you are in the hospital ASK for pain meds if you need them. They won't just give them to you automatically the whole time. If you feel bad tell them and specifically ask for something for pain. They also gave me something for nausea (I had to ask) when the anethesia was wearing off.
I had a really tough night last night. Thought I was coming out of the chemo fog but had a total set back. Had the worst headache I've ever had and nausea too. Had to take meds for both and finally fell asleep from the meds. I feel a little better today, but I'm not going to do anything other than take my daughter to her riding lesson. I am really not boucing back from #5 like the others. I didn't expect to feel so sick a whole week after tx. -
Melia, I think that's a really good idea. It would be kind of a safe, easy way to make your kids (and you, too) more comfortable with the baldness issue. You could do your makeup up nice, wear a cute hat, and cook up a storm - they could start getting used to the sight of you without hair, and you could start getting used to them seeing you without hair, without going totally bald. Sometimes it's easier in baby steps. I'm sure everyone will be ok with that, and then you can take the next step once you see that the world doesn't end. I sort of did that with my mom, because I was afraid that it would upset her to see me with no hair at all....and she did fine with it. Anyway, the reality is you have no hair, and they know it, and it sounds to me like you might be ready to start coming out of the closet in that regard, so go for it! Then you can put your wig back on if you're more comfortable, and you still will have accomplished something. I have friends who have told me flat out that they didn't want to see me bald, which I thought was odd, but I have respected their wishes. Otherwise, even though I feel a little self-conscious, I let people see my bald head. That's just how my head looks right now - and thank goodness for wigs!
Mel -
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Should I gather my courage and wear hats so I can cook?
Melia, that sounds great! And, if I remember correctly, I had to sign a release at the wig shop stating that I understood that my wig was not to be worn around stoves and bar-b-ques. The *last* thing you want is for your wig to go up in flames . Talk about trauma! -
Thanks for the advice ladies. I think I will do it. They are all in their twenties and have been so supportive. It's a little odder with my son in law since he and my daughter just married in August, but he's a doll. And we wants to learn how to barbeque!
Mary, I really hope you can have surgery too. It's hard to gear up for something and then have to wait. It will be good to have it behind you.
Jan, I hope you feel better soon. Poor baby. I am thinking of you.
Melia -
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I am really not boucing back from #5 like the others. I didn't expect to feel so sick a whole week after tx.
Jan, I know what you mean. Tx 5 was the hardest for me...I hit the wall the first week out, and I am STILL not back up to speed, and I am due for another this coming Wed. The fatigue is awful...I am tired from the moment I wake to the moment I go to bed. On the plus side, I do not need medication to help me sleep, and I usually only wake once or twice during the night with hot flashes. Sometimes I wish for the ativan to help with my anxiety, or an ssri to help with my mood (terrible today) but on the other hand if I do not take it now, I do not have to worry about weaning off later.
Feel better! -
Well, I am sitting here, bottle of Lasix in hand, waiting to hear from my internist. I finally called my onc on Wednesday about this horrible fluid retention (my weight is up 15 lb. in two weeks, and I'm barely eating - arms, face, and esp. legs are swollen tight and I look awful). He suggested I see my internist just on the remote chance that I might have some cardiac dysfunction from the adriamycin. So yesterday I saw my internist, and she didn't think it was cardiac but sent me to the hospital for an echo, a chest x-ray, and lab work. She gave me a script for Lasix but said not to take it until she had seen my results...that's asking a LOT in my state, but I'm waiting. I've never felt so fat and unattractive in my life! Can't bend my legs, my feet are so swollen they're almost round on the bottom, and my weight is at an all time high. Besides that I'm bald with no eyelashes or brows. I need to just go into hiding, I think. Ok, just needed to vent...now I'm going into Houston proper to have lunch with some friends. Was going to shop, but in this state, I think I may not be doing any shopping.
Have a good weekend, everybody. Jan, hope you feel better.
Mel -
awww mel you poor thing. Well, I think you are beautiful...especially where it counts!
from one bald, eyelash-less, drippy-nosed woman direct to you!
hugs xoxo -
Oh Mel, I hope you feel better soon. Poor baby.
Melia -
Hello everyone;
Skye: Ativan does not stop the hot flashes or the waking up at nite. I have used "Zopiclone" (sleeping pill), and it gives me about 5 hours uninterrupted.
Lynn: Wish I were going to Flordia. I'll be thinking of you on May 8th...your LAST chemo.
Shorti: How are you feeling after 5 days?
Caya, Dar & Tae: How are you, haven't heard from you guys in a while.
Rebecca, MizSissy, Nancy or whoever: I have not had a period since I started chemo. The doctor will be putting me on Tamoxifen on May 11. Does this stop your menstural cycle or do we have to take another drug? I was PRE-menopausal prior to chemo, 100% Estrogen positive, 75% Progesteron positive, and HER2 negative. Will my period return? I am 52, so you'd think this would stop it, but I don't know the answers.
Mel, I got your pics, very nice. I sure hope you get rid of that swelling. Keep us advised what the doc says.
Nancy: I love YOUR LICENSE PLATE!!
Mary: I have a real hard time cheering for the Red Wings, they knocked out my boys...Boo Hoo. As for your cold sore, ask your doctor for a prescript of Zorivax, they sell it over the counter in Australia, and it work wonders on clearing up cold sores. Also, make sure you ice your lip alot as that helps take away the swelling. I woud doubt they delay your surgery over it though.
Horsegal: praying for your son in Iraq. My girlfriend's son is currently deployed in Afghanistan, so it is a constant worry.
Cindy: Hope your neuropathy clears, I have heard that the "B" vitamins help with that.
I never had anyone stay with me in the hospital, and I can tell you that they are very short staffed. To go to the washroom, I basically had to make it on my own, even right after surgery.
Melia, I have the same problem with my family, and seeing me bald. My husband is the only one that has seen me, however, I have had scarves on around my sister.
Jan, hugs to you. It will be two weeks on Monday that I had #6, and I'm still not fully bounced back. Sleeping lots in the afternoon, but not at night.
Amera, are you going up to Maine anytime soon. If you do, send me some pics. I loved Maine.
Hope everyone has an excellent weekend. Take care, big hugs to all!!
Joni -
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Look at all the plastic surgeries (that are not a medical necessity). Why can't people teach their daughters that the inside is so much more important that the outside?
I RECENTLY SAW AN EPISODE OF DR. 90210 WHERE THESE TWO 20 YR. OLD TWINS IN SOCAL WERE GETTING BREAST ENLARGEMENTS...LIKE B TO C. THEY WERE BEAUTIFUL GIRLS. IF I WERE THEIR MOTHER, I'D HAVE FLIPPED THAT THEY'D TAKE SUCH UNNCESSARY CHANCES W/ANESTHESIA, ETC. PLUS, IT MADE SUCH A MINIMAL DIFFERENCE IN THEM, YOU WANTED TO SAY TO THEM: DO YOU REALLY THINK PEOPLE ARE THAT FIXATED ON YOU THAT THEY WILL EVEN NOTICE? VERY SELF ABSORBED GIRLS.
HEY ALL, I STARTED MY TAMOXIFEN ON WED. FOR SOME ODD REASON, I WAS DREADING IT BUT THEN I FIGURED THE SOONER THE BETTER, SO I'VE SET UP ONE OF THOSE SUN-SAT PILL BOXES LIKE AN OLD LADY... I GOT MY FIRST LARGE DOSE OF HERCEPTIN (THE 90 MINUTE DRIP) ON THAT DAY TOO AND IT WAS UNEVENTFUL. I AM VERY TIRED TODAY AND NOT SURE IF THAT'S DUE TO A WEEKS WORTH OF COMPANY (WHO JUST LEFT) OR THAT I FORGOT TO TAKE AN ATIVAN YESTERDAY (WITHDRAWLS?). -
Mel,
I'm feeling quite nasty myself about now....my weight is very up and I need to get a grip. It's really bothering me. I am SICK TO DEATH of the wigs and I look like a man w/out them (straight from my kids mouths). I think I need a few quiet days home alone w/out company to regroup. -
One last thing: I take Lunesta to sleep and it works well.
Also, gave my veins a 3 week break and the nurse was able to get the IV in w/out a hitch on Wed. I was so relieved. No port necessary. -
They never did an MRI to see how much it shrunk because with lobular they have to do a mastectomy anyway since is is like a vine and not a solid tumor. I think we should get some numbers from the pathology report. I never asked how big it was to begin with because I was afraid after they said Stage III. I didn't want to get this mental picture in my head of the cancer being so large. I felt it was better not to ask. My dh will be there for the surgery but I only stay 23 hours -- I'd really like to just go home, but I think they will have me on oxygen etc. so I'll stay the night. I know I won't get much help from the nurses. If need be, DH can stay but I think I'll be ok. Just give me some DRUGS for the pain and I'll be okay.
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Mel, please keep us up-to-date on your problem; that swelling sounds very worrisome, not to mention your discomfort!!!!! We are waiting to hear more.
Mizsissy -
Jan and Mel, sorry you are not feeling well. Sending hugs your way.
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Mary, I think you'll be surprised at how painless the surgery is; but I have forgotten, are you having reconstruction or not? Same time?
Mizsissy -
Melia...DOH! Lorazepam IS the same as Ativan, I had no idea! But Wikipedia says it was first marketed as Ativan. No wonder it helps me sleep 5 hours in a row. Here I've been thinking about daring to try Ativan and been on it all the time. I don't seem to feel any sort of addiction to it though, I only use it when I'm actually nauseous and otherwise use tylenol pm or nothing. The things I learn on this board that I would otherwise never think of...
Jan, sympathies on your chemo fog for TX#5. Hope you get over the headache and such. I'm still pretty out of it myself this week, had to declare a sleep day today myself.
Mizsissy, those med equations seem so complex right now. You are right, it's a very important issue and I'm realizing I need to educate myself a little more on what each of these usually displays in terms of se's. I'm hoping to have a clearer brain during rads to contemplate some of this stuff.
Horsegal, do post a pic of your son if you can! - Skye -
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. I've never felt so fat and unattractive in my life! Can't bend my legs, my feet are so swollen they're almost round on the bottom, and my weight is at an all time high. Besides that I'm bald with no eyelashes or brows. I need to just go into hiding, I think.
Mel
Mel, I agree with Rebecca, you look great to us. But I hear you, I'm also retaining fluid though not to the degree you are. I've had a second stubble fallout since my final Taxol Monday and also feeling fat and bald and about as unappealing as ever in my life. I feel I am literally hiding out. When I had to greet the roofers coming here to give estimates yesterday I am certain they were frightened by my appearance.
On the topic of wearing a hat instead of wig in front of family, I wouldn't hesitate a moment. I do feel a little more comfortable in scarves, however. I think they cover a bit more and aren't so prone to pop off, especially with a liner underneath. It's funny, my youngest son has no problem seeing me bald but the older one is really uncomfortable with the thought so I make sure to stay covered when he is around. The dh has no problem with cue-ballness, either. He says he finds it "intriguing." - Skye -
mel , jan hope you are feeling better . I am on day 5 of my last taxotere and have been hit hard ....man when you come off the steroids your body does a meltdown . I am sooo tired , my head is ok but body ... man walk around like a little old lady . Keep thinking this is it !!! I have to get up and walk around putter a bit too .
its funny you think you are done .... ya right .. takes a while then WAM ..... not done yet .... friggin dope ! (yes its supossed to do its thing but enough is enough sometimes .
I am on a winny , bender today ,,, wanna feel better .....
Oh girls we are almost there hang in ... I need a nice warm beach
Planning on a country drive tomorrow going to look at kayaks for our daughters .
Me I go bald around the house and wear my scarves or caps out . Sunglasses complete the outfit . My hair is starting to grow back sort of furry on top ,can see dark black hair nice and soft ... now for eyebrows how long will that be ?
he he .....
gotta go get an icecream bar and feel better yum yum . -
Good lord! I was reading some fashion mag at rads today and saw where some famous dermatologist recommended a "miracle eyelash thickener." Went online and found out it's $160 for a 6 month supply. I will send you the link if you'd like However, I am getting pretty desperate. I really look like an alien. My brows are growing in white so you cannot see them. I am getting better at drawing them in though.
Also went to check out Nioxin for my hair. I feel fine but still look dreadful. Although, I did see a gal at rads today wearing a baseball cap. She had just enough hair to cover the sides. It didn't look bad at all. I told her I loved her hair and she nearly choked, but we had a good laugh about it. I would so love to have enough hair to wear a baseball cap. I cannot imagine it will ever grow enough though. I am really getting impatient.
It's still just mostly white fuzz but I *think* there's more of it. I do think it fell out 2 weeks after my last chemo though. So technically, this is just 3 weeks worth of growth, not 5. UGHHHHHHHHH!!!!!! -
Mary - I had a cold a week before my surgery and was fine (cough and runny nose). The docs all said as long as I didn't have a fever it was OK (and the cold was mostly cleared up before surgery anyway).
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No, no reconstruction now
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Had a nice chat with the onc. this AM. Got my script for the Tamoxifen. She didn't say and I didn't think to ask - does anyone know if AM or PM is better?
She also is sending me to speak to a radiologist. She's having some second thoughts about me NOT having radiation. She's reviewed my records and apparently there was some kind of nodular growth on the sentinel node that was cancerous. That's the first I've heard that the SN was anything beyond positive for cancer.
She wants to have the radiologist review the records again (my case was reviewed by the local BC board (surgeons, oncs and radiologists) at the start of my treatment and radiation was not identified as a need at that time). All my reports will be forwarded.
She said I only get one chance to get this right. Three years from now it will be too late should a recurrence happen. So I see the rad. MD on the 9th to discuss the possibilities.
sigh
I was pretty upset but when I got to work a wonderful coworker said to me: "This is great, Cindy. You have a doctor who's not complacent about your care. And you didn't have to worry about radiation all winter as you went through chemo. Now is soon enough to be concerned about radiation."
So I'm trying to stay as positive as she always is.
At least it's to be a beautiful weekend. I'm going to get my bike out and ride.
Hope you all have a good weekend.
Cindy -
Quote:
did get the news on my EKG, and all results were good and positive. Even after all the AC, Cytoxan and Taxol the ol' ticker is still pumping perfectly, so evidently my chest pains are coming from the bone pain. A bone density test is next on their list for me. But at least I have a full clearance for Herceptin.
CONGRATS, SKYE, ON THE GOOD ECHO SCORES. I FOUND OUT THAT MY MAY ONE WAS 53 AND MY FEB. WAS 55. THEY TOLD ME IF IT GOT DOWN TO LOW 40'S, IT'D BE AN ISSUE FOR HERCEPTIN.
MIZSISSY, READING YOUR ATIVAN WARNINGS. SKYE, LOL'ING ABOUT YOU'RE NOT REALIZING ATIVAN WAS LORAZEPAM. ANYWAY, I FELT LIKE CRAPOLA TODAY AFTER NO ATIVAN YESTERDAY. TOOK IT TODAY AND FEEL GOOD. HMMMMM.... I MAY NEED TO START THE WEANING PROGRAM. MIZSISSY, YOU'VE GOT ME PARANOID. ACTUALLY, ONE OF MY CLOSEST FRIENDS IS IN NURSING SCHOOL AND SHE LOOKED UP ATIVAN AND SAID IT'S HIGHLY ADDICTIVE, ETC...
HEY, GUESS WHAT? MY COMPANY IS COMING BACK PLUS ONE. KATHY IS RETURNING TONIGHT W/HER TWO DAUGHTERS...THEY VISITED KENT STATE TODAY AND NEED TO FLY OUT OF COLUMBUS TOMORROW AT NOON. I SAID I'D LEAVE THE DOOR OPEN. THEY SHOULD BE IN FAIRLY SOON. -
Amera,
So you're brows are growing in light too.... interesting. I've been noticing older men who are totally white w/these dark, dark brows.... is it only in chemo patients whose hair follicles have been blasted, that our brows go invisible? I am still not good at the penciling...
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