Chemo in Sept 08
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Hi everyone,
I feel totally out of the loop but I'm happy that so many of us are finishing up. I think I'm primed to have my final AC Friday evening then I'll take off, get my Medicare supplement insurance, resume my original Medicare and return happily back to the world of good medicine.
Genia, I do hope you get the port out and feel better soon. My port will be in until next Spring I think if it keeps in good condition. Thank goodness the itching stopped.
I'm a bit afraid for myself sometimes, though I'm mostly upset for my darling son... who has to navigate the Asperger's world and is coming along so well recently...He is off to an Anime-Manga meeting with others who love it and are his age....YEAH!
I must continue make sure that he is self-sufficient as possible, especfially if I may not be here for him as long as I would like. I feel this urgency to get it as right for him as I can, so that he can go on successfully because his dad is not present for him.
.I am triple negative and have been told I need aggressive therapy and mine has not been conducted as it was prescribed...but my grandmother who raised me never believed in crying over spilt milk so I press on and on. I've had a few bumps but thankfully I am able to return to Medicare and continue treatment without being penalized for having this diagnoses.
I am an autoimmune disease poster child so any immune boosters,dietary booster and some vitamins I've taken have had me nearly hospitalized. I am taking B6 hoping my painful fingertips will get help. So far my nail beds are 3/4 blue/black and will probably lift and reappear.
I hope to share holiday notes with everyone if I can.
God willing after Friday I will have to put up with NO MORE CWAZY Medicare HMO/PPO Advantage DOCS.
love and take care all,
xoxoxo
mina
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I had my mammo yesterday. Showed "cyst with debris". WTH? Talked with radiologist ( the one who did MRI biopsy) and he wasn't worried since I'm on chemo. So repeat in 6 months. Did throw -up after brushing my teeth.Toothpaste made me nauseous!!?? Anxiously awaiting last treatment and still thinking of what to do to celebrate.
D
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Hi:
My last TC is tomorrow. Yeah!
Then a month off, then onto rads. My metal mouth usually goes from day 3 to day 10 so Thanksgiving won't be so great plus my DS might not be able to come home. I booked his flights long ago when he had a job in July for a month. He moved to FL in May because he graduated from Eckerd in St. Pete and all his friends were there. He had two jobs, each for a month, bad luck, one got laid off because of seasonal/weather and one worked for a restaurant that closed its doors. If he gets a retail job for Christmas, he can't come. I just said do what you have to do and we will work out something for the holidays but I haven't seen him since Aug. I know he worries about me because he used to call every few days, then started calling a lot more. I don't know what will happen if he doesn't get a job soon but he got laid off the day after he signed a year's lease so he really can't come home so I've been helping him out. I worry terribly about him. He had a great job up here but was very depressed so I was glad when he moved. He has great friends there so I know he is ok. I'd just like to see him.Peeps
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peeps-
My son has applied to Eckerd. My brother lives in Clearwater. My son has no idea what he wants to do with his life. Your son sounds like my middle son-hasn't been able to find a job either and is very depressed. Makes it hard for us.
D
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Hi y'all,
Haven't posted for a while - @#$% fatigue; draggin my butt. I did notice a difference with the steriod taper - not the big truck on your chest feeling on day 3. I also started my bisphophonate trial; I'm taking one Boniva a day (yay - no IV drug); the trial is for 3 years.
Note regarding green tea (and actually all tea). Tea cannot be washed after it's harvested, so it's best to buy organic tea if you want to avoid the pesticides. I'm always on the lookout for bargins and have found very nice organic teas at Big Lots for $2.00 a box.
Thanksgiving will be a milestone this year - it will be the first time our whole family (birth family) will be together. My youngest daughter and son-in-law from Idaho; my oldest daughter, son-in-law, 11 month old granddaughter, and 4 month old inutero grandbaby from Memphis, son from Virginia Beach, brother, SIN, nieces from Charlotte, brother from Asheville, Mom & Dad, and various other relatives (33 in all) will participate in this Thankful, Celebratory Extravaganza. The event is being catered (no cooking - no washing up!) and my Dad has hired a professional photographer to record the event. Joyful, Joyful, Joyful!!!!!!!!!
XXOO
Donna
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Trudecox,
Same for me on the cold!!! blech! Congrats on good MRI results! Something I never seem t get! :O
Spring...
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Spring,
You too will have a good report. Just remember God is in control......the cold is better today.
I still have a long road, and as triple neg....it could come back. All tough stuff to think about.
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Trude - just curious, you say you are a triple neg - but your dx says ER+?
Donna
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Hi all......
Went to the surgeon today....and I have to have my port taken out, and another one put in. My onco said I didn't have to have another one....but the surgeon says my veins are awful and with 3 more treatments he's afraid I will have all kinds of problems. Plus I have the herceptin for a year after I'm done with the chemo......so I need the port in there. I fianally just told him to call my oncologist and talk to him.
I'll be having that surgery on Tuesday.......then chemo on Weds. I am dreading it......and the healing again......but this port is driving me NUTS!!!! The suregeon says the infection is only in the skin layer......not around the port. The oncologist doesn't wanna use it anymore.......because he thinks it looks infected.........DANG I'M SO TIRED OF ALL THIS!!!!!!
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priz47:
Eckerd is the most beautiful campus ever. Once you've seen it, you'd never want to go anywhere else. I'll tell you though, if I had to do it over again, I would have sent both my kids to state schools ESPECIALLY since they didn't know what they wanted to do. Then they get the basics, get out with little or no student loans and then if they decide halfway through what they want to do, they can switch to another school if they don't have the major at the state school. I hear a lot of parents say that now.
Yeah! Done with my chemo. My oncologist doesn't know what to make of me. I said I wanted to go to Boston for a 2nd opinion about rads and she went on and on about how I didn't want to drive to Boston. I said I have one shot (I hope) to get this right. They had trouble with veins today. The infusion specialist was sticking me multiple times all over the place, then she said, "how many more do you have?" I knew where she was going with that because she was the one who wanted me to get a port at my first chemo. So I said, "this is it, I'm done, this is my last one". She said, "We'll definitely find a vein then!" A little nervous about the stomach things that will come up. I usually start the sennecot, colace and enulase the night before the chemo but I had diarrhea last night and stomach cramps so I didn't do that so who knows what will happen to me this time? I had so much trouble with that after the first 2 TC's, not so much after the 3rd, I thought I learned how to manage it but of course, now there's this monkey wrench.
It's good to be done though. I had so many questions about the rads coming up. I haven't seen a thread in the rads yet about people starting in Dec. Maybe I should just join the Jan. one as it will be late Dec. by the time I get going.
Peeps
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Spring,
Yep, I know ....when I wrote that I was going off my pathology report which says my ER+ 18%.....my onc says that really doesn't count. I makes me in the same class as a triple neg. In addition, 80% of my biopsy cells were dividing, very agressive cancer. Hence the chemo first. It's all so confusing. After working in the medical field for 20 yrs, I am having to learn a whole new set of discriptives. My head hurts from all this. I think I still will have a mastectomy but haven't done any research about reconstruction or not ???? I am so overwhelmed and sooooo tired, it is tough to do all the research I need. Especially after being on a computer all day at work. I also have to do rads. I agree with Peeps, so many questions, but the answers are so hard to find.
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Hi Girls,
Turecox, good that the treatment is working, some days it does seem that we have so far to go, but we will get there in the end. Try to stay positive and get plenty of rest. Any questions you have, post for us to reaseach for you, if you are to tired or don't have time.
Genia, So sorry to hear about that nasty port, it is about time your luck changed, I am sure that the new port procedure will go well and you won't have a days worry with the new one.
Bar62, I am sure that you will be here for a very very long time yet, but I can understand your concern for your son, we just want to make sure our kids will be alright. We are all here for you if you feel down.
Priz47 I had the same experience as you with the toothpaste, nasty. I just don't get how the taste of even water can make me feel sick when on AC.
Peeps, sounds like your son has had some bad luck, but try not to worry as it won't do you any good. I am sure the new year will bring some great things for you and you son. I hope he finds a way to come home and see you as I am sure it will do you both good. My son is in the UK and we are looking forward to seeing him at Christmas, I haven't seen him since August too, sometimes it's really hard. I will be sending you some really really strong vibes!
Donna, sounds like you are going to have a fantastic time, you deserve it, can't wait to hear all the details and see some pictures.
I am good and must rush off for an early Christmas lunch with the Singapore Flower club.
Singapore Chris
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Genia,
Maybe this port will be the best !!!! If I had to think of them finding a vein on me for every treatment ......I would really loose it. The poke for the port is soooo much easier. I have to admit I can't wait to loose mine, but I am thankful for it right now.
Priz, I am soooo glad to be done with AC. Nothing tasted good !!! It seems like all food tasted the same. My poor husband, would cook a really nice meal, it would look great but my taste buds were soooo off. I know it was good, he is a great cook. Even better than me.!!!
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What scares me is that my son STILL has loss of taste and he finished chemo 1 1/2 years ago! I definitely do not want that! Genia you will be glad to get a new port, so much easier.
trudecox- the reconstruction was better than I thought it would be. i had a unilat with TRAM and am happy with it. Lots of good info on the reconstruction board, so ask away.
D
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Genia, - Nurse navigator told me of a woman - her port drove her crazy. They took it out and put in a new one, and SHE NEVER HAD ANOTHER PROBLEM! God - please let this happen for Genia!!!
Trude - The whole reconstruction after Mastectomy thing is like another whole education in itself. Will you also need radiation after mastectomy? probably not, but if you do, another layer of complexity. Let me know if you have any Q's, - I have researched it out the whazoo. I decided on natural tissue vs.expande/implant b/c I also likely will need rads.
Peeps, YOU BE DONE, WOMAN!!!! Wooo Hooo!!! Congratulations! I'll likely be starting Rads in Jan, I think. Let me know if you start a group!!
Bed is calling.
Spring. 0 -
My final AC tomorrow. Just when food started to taste ok again.
(Will start Taxol and Herceptin in 3 weeks) Genia - Good luck with the new port!
Peeps - Woo hoo! no more chemoooooooooo!!!
Mina - Good luck with your tx tomorrow!
Hugs to all!
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My first Taxol was a breeze...I get all of my steroids during my pre-med flush, and I was monitored every 15 minutes for any allergic reaction. I'll be having treatments 3 weeks on, shots Fri & Sat, one week off, for 12 weeks.
I have been switched from Cardizem to Lopressor for my trippy heart thing, because my legs were swelling up like fenceposts...nothing like being bald AND having not sexy ankles for the holidays!
I'm so happy for everyone that's DONE with chemo! Rah Rah Rah!!
Genia...I'm also praying that your new port will be the perfect one so you can finish up your treatments like a charm...Lord knows, you've been through enough!
I was supposed to have my port taken out, because they were unable to determine if it was infected (unable to draw blood, no sheath, the tip of my port was slammed up against my artery and it was trying to suck up the artery instead of blood), but my blood cultures came back negative (YAY). On Wed, during treatment set up, the port was flushed and Lo and Behold...the syringe started filling up with blood...everyone was so excited...no excuse why, other than it shifted position...so that's one less surgery that I'll have to have! Now I just have to wait for my trippy heart to convert back to it's wild little dance so I can have THAT surgery before Jan 9.
Keep your fingers crossed!
Robin
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so glad to see all the posts from those of you that are finished! YEAH!!!!
Donna- that sounds like a GREAT thanksgiving. I know it will be a blessing to all be together. Have a great time!!
Thanks for all the good vibes sent my way!! No reaction to the first taxotere. DH was thrilled but watched me like a hawk..like to drove me crazy. Onco said i wouldn't be sick, don't get emend with taxotere and so far not icky yet. He did say diarreah could be wose on the tax...ummm it was bad on FEC!!! Thankfully i have lots of lomotil. Get the nuelasta shot this afternoon but so far so good. I will have to post again after the roids wear off but I appreciate you girls sending good kharma my way!
Have a great weekend!!!
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sorry to bounce around on ya'll but have a question for those who took tax- if you got thrush how quick did it come??? The girl that gave me the neulasta shot today looked at my mouth and said she suggested a call to the onco as it looked like it was starting and with the office being closed this weekend she thought better safe than sorry...Did anyone start thrush this quick??? I had a few white spots after the first FEC but salt water took care of it..this feels different though. Feels like my tongue is stripped and sore..
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Juli-
Your scarves always look great in your pics. Did you get the rectangle ones or the square ones? I got the square ones but they don't look like yours do. Do you have a trick for tying them. The best results I've gotten are with the t-shirts made into a turban that they showed me at the Look Good Feel Better class.
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Hi Betty's Girl:
I got thrush 3 days after my 2nd chemo and had it after my first one as well, not the 3rd. It was going down my throat. If the girl told you to call, then she must have seen the white spots. Don't wait because it grows fast. My onc gave me the nystatin swish and swallor after the first one, then again after the 2nd one then the oral medication after the 2nd one and finally got smart and put refills on them too.
Peeps
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TrudeCox:
I don't get it about the ER+18 being like triple negative. Can you elaborate? Thanks everyone for the well wishes. The decadron makes me so nasty. I had one of those days when all stupid little things go wrong but I am really concerned about the "chemo brain". I came out of the supermarket which I've been to 100x and I went out the "in" lanes. I was halfway out when I saw a guy coming in one of the lanes, thank God, there was no one in the 2nd lane that I was in, I had to back up. Went for the Neulasta shot, they called 3 of us in at the same time and I was talking to the lady next to me, crabbing about how long all this takes, it's neverending, going on and on, probably take 8 mos. plus the 5-yr. hormone. The lady across from us gets up to leave and says, "try 13 years, I've got yout both beat". Wow, there is always someone worse off!
Singapore: Thanks, I do hope my son has better luck in the New Year. Looks like he WILL be coming for Thanksgiving, no job yet. Glad you will see your boy for Christmas. There is no bond like a mother and son.
Peeps
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Thanks for the well wishes........I'm about to back out of having it done!!! This one STILL works......and the surgeon says it's NOT infected.....just the outer layer isn't healing right. So why do I wanna put myself through another surgery.......only this time with TWO incisions AND chemo the next day.
I'm SOOO confused right now.....one minute I want it out of there and another one put up higher.....the next I'm gonna call and cancel. The surgeon at first said it was fine......leave it alone.......then when I told him what the oncologist said........he just kinda shrugged his shoulders and said "We can move it......it's not a problem"! NOPE.....not a problem for him.....but it sure is for me!!!!!!! He also said he likes to leave them in there for 6 months just in case.
Someone help me figure out what to do.......cause I swear I'm about ready to scream
Peeps....I have chemo brain really bad too. It's really not safe to be driving.......I ran a red light the other day. Luckily nothing was coming........but still!
Guess I need to move over to the bitch and moan thread......cause it seems like that's all I ever do.......lolol
hugsssssss to ya'll
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Genia - I spend a lot of time on the bitch and moan thread. Feel free to join me anytime. We seem to follow each other from thread to thread anyway. You could always stop by the "I can't seem to get my act together" thread on those days when just flushing the toilet is an accomplishment.
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LOLOL.....thanks Jane!!! I'll remember that.....that made me laugh out loud.
love ya girlfriend......
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Peeps,
My onc said the 18% is so low it is unremarkable. She said this makes my cancer non responsive to hormones. I was taking HRT at the time and she thought that might have made the percentage the way it was. She also said it was pretty unusual to have just the positive, so she felt it was not a true representation. Also adding in the high percentage of cells dividing (80%) that made her lean more towards the triple neg. Not all tests are completely correct, as we all know ....mammos dont find all cancer. Even with a 2 cm mass, the mammo did not find mine after the sonogram.....all pretty strange stuff. I guess each of us is different and not all answers are black and white.....lots of gray areas. Hope this helps.....my surgeon was head of breast cancer research at Stanford and she agreed.....so I guess I wont argue !!!! lol !!!
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Genia,
It's O.K. I feel unsure alot. It's hard to know what to do sometimes. Especially when two Dr's give you different opinions !!! UGH!!!! I would go with the onc. They see more of this stuff than the surgeons do. They just do there thing and move on to the next, your onc sees more patients with ports over and over and over.....just my idea.....hope it helps
Trude
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Well the reason the oncologist sent me to the surgeon was to have him check it. He said since he put it in there.....he wanted him to look at it. But the first words out of my surgeons mouth was.......it's not infected. He said if it were.....I would be very sick! But then he said he would take it out and put another one in if that's what the onco thought was best.........HELLOOOO........!!!!
If it's not infected......then I'm leavin it alone! I think.......lolol
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bettysgirl - I had thrush after my 3rd AC, about 5 days after. My tongue was completely white. Diflucan is a miracle drug...it was so much better the next day!
Jane - the scarf in my pic is from headcovers.com. They call it a pre-tied scarfette. I just got my anohki scarves (rectangular). I knot them in the back and let them hang long.
I have a problem... When I had my AC today, the nurse forgot to give me back my other 2 Emend pills and I just realized it at 5:30 pm...no one is at the office. The answering service said they would relay the message, but since tomorrow is the weekend...I AM SCREWED!
It was a free sample because my insurance doesn't cover it. I will have to take Kytril instead, which doesn't work as well for me. So I only need to take decadron tomorrow, because I had 1 Emend today??? I hope the doctor calls me back. 
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Genia, Maybe leave it. You can have it switched later if it's a problem, right? You seem to be leaning in that direction.
Does anybody here experience peripheral neuropathy? Last night and today ( and I am flippin DONE with chemo!!) I started getting like stingy pinches / hot pins and needles, sort of a crawly feeling on and off in my hands, fingers, wrists. Is that what it feels like?
Does anybody know? during chemo it just felt a little numb in my finger tips. I am getting more L-Glutamin tomorrow...
<<insert "ugh" here>> Springtime
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