March 2011 chemo-lounge
Comments
-
Jules: I have not shipped to friends....it's possible though! You know I would do anything for you gals! You are my "peeps"!!! Heck I use so much garlic...I bet even your tastebuds could taste it! LOL!
Stilts: Whoever thought we would be excited by hairy legs....boy BC has made me say and do some super strange things like "I am so excited - my legs are hairy" and also feeling like everytime I go to see ANY medical professional I should immediately remove my shirt. I am scared of what I will do when I go to the dentist next month.....I will have to really think hard to not just automatically take off my shirt!!!
0 -
Jules59--I'm probably jumping the gun but I still have hair and the new stuff is already trying to come in. I stopped seeing any significant shedding after Tx#2. The old stuff is mainly grey so it looks like a haze around my head in the right light. I'm afraid I'm going to bypass the soft, fluffy new hair and go right back to my wiry straight hair. It'll stand straight up, along with my greys, until it's long enough to fall over. Won't that be great look?!
My hairdresser wants me to try a new Redkin line called Intraforce. It's meant for people with thinning hair and aleopecia. It's supposed to super-clean the follicles and stimulate blood flow to get the hair growing better. The 30-day 3-piece kit was $25 and I'd pay more for something if there was a hope of getting my hair back quickly.0 -
So funny about the dentist Maria! lol
pasmithx2: I would do anything too. I've spent $25 much more frivilously. I'm still losing eyelashes and eyebrows though, and nothing is coming back. I had thin hair and very little body hair before chemo, so I hope that may be why it seems to be taking longer for me to get any hair back. I was a bald baby for quite a long time. I really want some kind of hair to come back soon though. Glad you managed to keep from going completely bald.
Penny: Hurray! At least you are finally done with that useless port. I thought that was one of the worst things that happened to any of lounge lizards. Good luck with your final chemo. You're done! So happy for you. Hope you get some celebrating in today.
Everyone else: have a great day!
0 -
kay1963--some days I wish I had the thin hair and very little body hair. I'm lucky that it's blondish and not highly noticeable. I wish I could specify what comes back. I'd be happy with my arms and legs as-is. It's thin, fine and light, like other women have. I still have eyebrows, although I fill in some patches. My eyelashes are still there but only the light hairs which still look like nothing, but a little mascara pops them out. We're going to appreciate our hair, wherever it is, whatever it is, more than ever when this is over
0 -
My hair seems to be coming back a little. I'm going to start taking pics so I can see the progress better. I took my first pic 3 days PFC and I'll take another one this week as it is now 4 weeks. My eyebrows and lashes never went completely, just thinned. That seems to have stopped. Also the crazy eye watering. My Onc asked me if they were still watering. I thought "WTH, couldn't you have told me that might happen before it actually did?" Anyway, moving on. I still connect the dots and use mascara to pop them out. I'm using Tarte Multipleye (I think that's the name). It is a natural growth stimulant for the eyelashes. Somewhat spendy, $60?, but oh well. I may look into the Redken product. I've been using Nioxin and am taking biotin. I saw ONE small stubbly hair in my armpit this week - woohoo! Hair "down there" - no sign yet, fine by me!
My tastebuds recovered at about 2 weeks, just like they did every other time. Don't you worry, you will all have some soon. I hope everyone is having a good day. I am going shopping with a good friend and her daughter and my DD - yeah! It will be fun, inside activities with AC are key now that it's 100 degrees. The swelling in my cankles/feet is less today, no doubt due to the diuretic. I haven't started tamox yet, I filled the script, but kind of waiting for swelling to subside as that is a side effect Tam can cause
0 -
Penny-so happy you finish tomorrow. What comes next for you?
I have #5 tomorrow and an onc visit. hoping he can sort out the 3 surgical visits from last week and get us all on the same page!! Very confused and the poor guy has a huge list of questions to answer. he has learned to ask for the sheet before he comes in the room so he is better prepared.
I type eveything up ahead of time and leave room to fill in the answers. my brain has gotten so bad-if i didn;t write the questions down I know i would forget half of them. I am gong to ask him if i can get a Shingles vaccination. I have seen it on several threads where ladies have come down with it after finishing chemo. Anybosy have experience with that?
Finally heard from ins co-they will pay to remove the good breast. I really wish i was just getting a lumpectomy but the chest wall thing makes her say mx. I have never really talked to the onc about it so it made the list for tomorrow also.
0 -
Yeah Penny so glad it is your last treatment! I know you are so happy. Good luck to you and wishing you SE free!
0 -
Just finished my last chemo. Penny, you're probably only a few hours away from the same. No party at the hospital, just a few congratulations. I told them I never want to see them again,and they said the same.
I also heard 4 weeks until hair grows back. I never really lost body hair, and in fact had to shave my legs (not very often, maybe every 10-14 days) if I wanted them soon. I have a LOT of hair, though. I hope that means it will come back sooner; I always claim my German roots make me hairy (not sure why I think Germans are hairy).
pasmithx: I wish I could specify where and how much hair came back. No armpit hair and a nice trim bikini line. And no gray hair!
lily: good news onthe insurance. I had hoped for a lumpectomy too, but I am getting used to the MX. It's an adjustment, but I guess it does give some peace of mind.
supersally: sorry about the swelling! Let us know how the tamoxifen goes; I talked to my onc about it today, and she mentioned that as an SE. I had also heard of joint pain, but she told me that was more associated with arimidex than tamoxifen. I hope that's true because my knees have not enjoyed chemo.
I'm hoping the SEs are minimal, but knowing this is the last time may make them seem more bearable.
Good luck to all facing the chairs tomorrow.
0 -
Congratulations Maxine - I hope you breeze through this last one with minimal SEs.
I am going to be on Arimidex and am expecting the joint pain thing - but hey it was never all going to be perfect, I enjoy walking - there is a 900K bush track across WA and my sister and I walk sections (3-4 days at a time only - not brave enough to do end to end ) with a full backpack as you have to take all your food , water etc. I am hoping my knees will stand up to Arimidex enough to let me get back to that.
lilylady -good news on the insurance.
Well I am off to the lounge in a few minutes - thank you all so much for your encouragement on finishing. There are no celebrations where I go but I will now have a mental picture of you all standing at the side cheering as I go through the finish tape.
0 -
Congrats Maxine!
0 -
We are cheering for you, Maxine and Penny! So great.
Lilylady, LOVE that you write up and submit your list early to the onc. Very smart. Glad the insurance company is on board.
pasmith, thanks for the Redken suggestion. It's a ways off for me but my hair was a bit thinner on top to begin with (I used to complain -- I'll never do that again...)
supersally, hope the swelling didn't get in the way of retail therapy.
I'm putting Band on the Run on the jukebox since it's on my mind. Keep thinking of the lyrics: "If I ever get out of here, gonna give it all away..." and "the first one said to the second one there 'I hope you're having fun'..."
Kay, please put more music on the jukebox. We've all made good selections, but you're the best with your selections!!
Maxine, thanks for the good wishes for my chair time tomorrow.
Sweet dreams to all.
0 -
Supersally, I have been wondering why I have the cankles going on big time this summer! Is it because of water retention due to chemo? I just starting my Tamox on Monday, I do not like that drug but I do understand how vital it is.
The heat is back in Ontario and these hotflashes ( more like hot head ) are hard to handle. I can hardly wait until my daughter is finished school. I think I will live beside the Bay so I can plunge my bald head in whenever I feel like it.
0 -
Finished #8 yesterday!! All done for me! The two nurses sang me a song and hugged me. I sort of felt sad, just knowing now that it's over and unknown for the future. Does that make sense? Today I have my shot. Got my radiation appointment set for July.
Congrats to all who are finishing this week. Hoping you all have minimal SE's. I am expecting to get huge probably tomorrow or Sunday from the steroids. I don't even have cankles, they are so much bigger than that! I stay that way for about a week and a half. It's not fun but I know there are much worse SE's, so I won't complain.
Have a great weekend everyone!
0 -
Can I just say how great you gals are? I love signing on in the morning before work and catching up with all of you. It is so nice to hear cheery posts and good news (well other than the cankle thing for some of you). I am so glad I have the lounge to hang out in! There is always great company here!!!
Pasmith: I hope that hair starts growing quick and beautiful! My eyebrows are still thinning..though I am seeing more stragglers grow in so I know they are growing somewhere. I hope they grow quick before they completely disappear. Gosh I won't miss playing connect the dots with them. Lashes have been there but I am so scared they will just all fall out - this has happend to some gals even 8 weeks after chemo! Yikes! I started using latisse in case. They do seem like they are a bit thinner all over but no real blank spots yet....crossing fingers. Leg hair is coming back but it is much lighter than it was before. Maybe in time it will go back to the normal...I hope not! That would be nice!
Supersally: HOw was shopping? Get anything good? I am dying to go bra shopping at Victoria's Secret as they have a sale through the end of the month I think but I have my exchange surgery next week and don't know what size I may be.......one of my good friends sent me a nice card and a gift card for VS and Macy's so I could shop for new bras and new shirts. What a doll....what a thoughtful gift...simply perfect. I can't wait to put it to good use after surgery and swelling goes down. How is the swelling??? I am sure the heat there could cause anyone to swell like that. Let me know how tamoxifen goes. I was on it for a week and then my PS made me go off of it - can't be on it for 2 weeks prior to surgery so I will start it again a few days after surgery.
Lily: I thought I was super organized, but you are GOOD (with your typed up list!). I am so glad insurance is on board...I didn't want to head over to the Ford HQ and shake them up for you
Did you decide on BLMX? If you have questions about it, let me know. Maxine: Glad you are finished! Spectacular!
Penny: You know we would all be there to watch you cross the line if we could! That is a perfect way to picture it...like an exhausting marathon that no one ever thinks they will complete and still be moving. Fabulous! I am glad you are done girl!!! High five on that!!!
Silia: Love Band on the Run! Good choice.....I just saw a commercial for Paul Mc Cartney...he's coming to Detroit. I bet that will be a good concert...thinking of getting tickets. I have to see when it is....with our pending move who knows if we will be here....life is nuts!
Timerdog: My hot flashes have really diminished now that I am 6 weeks after chemo. I started Tamxoifen and was on it a week but had to go off because of surgery. I hope the hot flashes stay like they have been in the past week or two..that is manageable. Before they were horrible!!! Let me know how Tamoxifen goes for you. I will start it up again a few days after surgery next week.
Colodisneylover; Congrats! Great news!! It does feel weird to be done....I have been struggling with that too. It's yet one more thing we have to get use to in all of this. I hope your cankles go away..
Well ladies...it's Friday. Have a fabulous weekend!!!!
0 -
Congratulations to all of us who are finished with chemo, and good luck to those who have a few more to go. WhoooHooo!!!
0 -
Congrats Maxine, Penny and Colodisneylover! You're finished! WooHoo! So happy for you!
Glad you like my song choices Silia! I will have to try to be creative. Here's one for Supersally and everyone else who is starting to get their hair back. Hope you like it, from the musical Hair:
Hair
Give me a head with hair, long beautiful hair
Shining, gleaming, streaming, flaxen, waxen
Give me down to there, hair, shoulder length or longer
Here baby, there, momma, everywhere, daddy, daddy
Hair, flow it, show it
Long as God can grow, my hair
Let it fly in the breeze and get caught in the trees
Give a home to the fleas, in my hair
A home for fleas, a hive for the buzzing bees
A nest for birds, there ain't no words
For the beauty, splendor, the wonder of my hair
Flow it, show it
Long as God can grow, my hair
I want long, straight, curly, fuzzy, snaggy, shaggy, ratty, matty
Oily, greasy, fleecy, shining, gleaming, streaming, flaxen, waxen
Knotted, polka dotted, twisted, beaded, braided
Powered, flowered and confettied
Bangled, tangled, spangled and spahettied
Oh say, can you see my eyes if you can
Then my hair's too short
Down with here, down to there
Down till there, down to where it's stuck by itself
They'll be ga-ga at the go-go, when they see me in my toga
My toga made of blond, brilliantined, biblical hair
My hair like Jesus wore it, Hallelujah I adore it
Hallelujah Mary loved her son, why don't my mother love me?
Hair, flow it, show it
Long as God can grow
My hair, flow it, show it
Long as God can grow
My hair, flow it, show it
Long as God can grow
My hair0 -
Hi ladies, sorry have been gone so long it was quite a journey this round but the next one is the last one yipeeee.
congrats to all who have finished up this week, I am only a couple of weeks behind you. I really dont want to do this last one but it is the last one so I know i wont chicken out.
As for hair, I havent lost all eyebrows or eyelashes either, just thinner. And since I switched to doxotaxol from FEC my hair has been growing back. I actually have a colour now to my fuzz on my head lol its pretty dark, might try out the whole brunette thing when it comes back.
Welcome to all who have joined our lounge since I have been in chemo fog. Looking forward to getting to know you I am sure the wonderful women here have already made you feel like family.
Ok off for some breakfast
Hugs to all
Kymn
0 -
kay1963--Love it!
0 -
Congratulations to all finishing chemo !!!!....last one for me is August 11th...then on to radiation and Arimidex !!! Did ask my ONC lots of questions about follow-up yesterday...was very surprised that he doesn't do routine scans (according to him studies do not show benefit???)...only if you have "symptoms of recurrence". Is this the new health care or is that the norm out there ? My first set of scans were thankfully clear...would like to have the psychological benefit of knowig they're staying that way and it would seem to me if there is a problem, finding it ASAP would be best!?!? Would appreciate your thoughts....
0 -
Stilts,
My oncologist doesn't do routine scans either. He says he doesn't want to expose patients to unnecessary radiation. Also says research shows that finding mets earlier doesn't increase life expectancy. I know this doesn't sound rational, but he is a cancer survivor, so I tend to trust him. I also have read about studies that support this. Also, he doesn't routinely test for tumor markers, as he says there are many things besides cancer that can affect them, and cause unnecessary concern. I will be seeing him every three months for a while, and can call him anytime with issues I may have. My first scans were clear, too, so I intend to live life assuming I am cancer free until he tells me otherwise. It will be hard, but I will try to put the fear behind me.
0 -
Yep me too, mine said the same things, come in for a routine check up , breast check etc but no scans for the same reasons. Kind of makes me nervous too . wonder if we can insist at least for the first year
0 -
My doc wouldn't even do scans because I was Stage 1. I am having a lot of soreness in my R hip...talking to med onc about it on next Wed. I hate the fear of always worrying about this.......and this is just the beginning of that.
0 -
Got #5 in today. Got all my questions answered. Bi-lat mx scheduled for Aug 8/NO NODES. Final decision made after breast MRI this week showed 4 things (probably B9) in my good breast. they said ultrasound and biopsy-I said just cut it off. I had already made up my mind anyway and that just confirmed it.Scans 2 weeks later to see where the lung and liver are at. Appts with both of those surgeons on Aug 22. If not surg then on to Rads. The organ sugeries will be decided on when we see the scans so long term planning isn't happening.
My Onc says I will be getting scans every 3 months for the first year at least. Probably because I am stage IV. I would rather risk the radiation than have the Her2 tumors do their runaway growing thing.
Best news. I have asked to delay my last tx by 4 days so I can go to Fla to see the last space shuttle go up. One of my BFFs has a beach house In Cocoa Beach. She bought it last fall and i haven;t been there yet. 5 of us going. I will probably struggle in July heat in Fla but heck it is hot in Ohio also. Not a space buff but I think it will be neat to see.
Hope everybody has a great weekend. Been in the chair for 5hrs so brain is maxed out.i will catch up on the posts later.
0 -
Lilylady,
Good that you now have a plan in place for BLMX. I'm sure it's a relief to have that part decided. I am so envious that you get to take a wonderful beach trip with friends before continuing treatment...it will surely be good for you and be a whole lot of fun.
Hope you recover quickly from this infusion and have a great time planning your trip.
0 -
Thought I would throw this out in case it applies to anyone else (I am a hospital pharmacist)....had my primary MD change my blood pressure medication from Lisinopril to Metoprolol after reading the newest studies linking ACE inhibitors (generic names end in -pril) to breast cancer and also the possibility that beta blockers (generic names end in -olol) may reduce recurrence rates. Think there will have to be more studies before most oncologists are convinced but I figured why not if my BP is in range !
Also having a struggle with my Vitamin D level (many articles out there linking to breast cancer)...currently on 50,000IU per week and barely climbing from 24 to 25. Anyone else out there following their Vitamin D level ?
0 -
Stilts, it took 4 months of Vit D 50,000 once weekly to bring my Vit D level to 45. I also take calcium with Vit D. Interesting about the BP info. I take timolol for glaucoma. Wonder if it works the same in the drops.
0 -
Stilts, I'm not on blood pressure medication, but my Vitamin D level was 12 when they checked it in mid March. I am going to start taking 50000 IU per week once I finish chemo. I guess the worry is that vitamin D can interfere with chemo. I am not sure, but I think it takes a while of taking the stuff before your level starts improving. Getting out and getting some sun would be a good way of getting it up too. I'm not supposed to get any sun this summer because of the AC though.
0 -
I started taking 35000 iu a week of vit d3, just months before i was dx. I stopped taking it when i started chemo, but now I wonder if I should start it back up?
0 -
lilylady - I am sure you are doing the right thing mx wise. good to have a plan. So exciting to be seeing the last shuttle go up - hope you have a brilliant time.
We all seem to have got the same advice re no scans on follow up, and the literature does support it. I am going to ask for one MRI post chemo though to check the things they found in my liver that were "probably benign. I just want to see if there has been a change in them post chemo. Then I will let it go and just get the clinical exams.
So good that most of us are near the end of this phase of treatment.
I have to have vit D levels done before I go onto Arimidex so will be interesting to see. I have also read some stuff about regular aspirin reducing recurrence rates. - Will ask my onc next time I see her, anyone elses seen anything on that?
0 -
KS Matthews: I think you probably should. I would definitely ask your doctor about it. I know when I found out how low mine was, she told me we would talk about it after chemo. I think it is okay to be on during rads and surgery, but I still have 5 weeks until my last chemo treatment and then I guess 3 weeks to give that to do its thing. Penny, definitely worth looking into. Both my sisters (and a lot of cousins/friends too) got mamograms after I got diagnosed. I told them all they should also make sure they get their Vitamin D checked as well. I don't think any of them did as yet though. Haven't heard anything about aspirin.
0
