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Anyone starting Chemo in Feb?
Comments
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So my update for today is had the MUGA today, meet my Surgeon tomorrow, see the Onc Wednesday to finalize chemo start date. Should be next week. I will have tons of questions for you all, I'm sure! I ordered some great scarves and a little sleep hat online, but havent got off my butt yet to get a wig. Sounds like I have 2 weeks to do it. Not sure what I'm waiting on....
Hope you all are feeling well today.
Carynn0 -
So, here's the picture I had my DH take upon recommendation from the LGFG seminar... to show where your eyebrows are so that you can draw them correctly. I liked the picture, so I posted it!
Day 12, no hair loss yet. Wig bought, but it needs to be trimmed, so I may get that done on Friday, (day after treatment #2). I felt pretty good last time on Day 2, so I may repeat the trip into Boston to see the stylist.
To satisfy all those hungry for updates, I will say that on Day 7 I got this weird pain like a stitch in my side from running... but no running was involved. I drove home from having my blood drawn to the western part of Massachusetts, which is where I live on weekends. By the time I got home, (1.75 hours), I couldn't move and couldn't take a deep breath at all. This lasted till late the next morning. I am wondering if it was some type of neulasta reaction? Anyway, anyone else have something weird show up that late?
Treatment #2 is this Thursday, and I am hoping for another weekend like the last. It would be really ok with me! Will let you know... the oncologist told me the second should be the same as the first, so I am hopeful.
Holiday Monday will feel good. Might be first one I have taken in a LOOOOOOOONG time.
Marsha- thanks so much for the listing and the individual messages to everyone. I so appreciate you doing this for us.
Much love all.0 -
Leah, great to hear from you and I love the picture! I can't take credit for updating the list, that was Caryann!
And Caryann, the job is all yours!!!! THANK YOU so much, I'm not really very organized but was trying to keep up with everyone. Please, please keep it up OK? And so glad to hear you are getting everything lined up. You still have time for the wig but looking at your picture you probably have a very attractive head under that hair!
Steph, also love your picture, so nice to be able to put a face to you. I'm thinking you have a very attractive head there also!
Kim, I've decided not to shave until I see some sign of the hair coming out. I too cut it much shorter.
Jel, haven't heard anything about yogurt. I think the bacteria though is the good kind. I say if it tastes good, eat it.
Freethought, LOL on the food issue. I will most certainly have some cheesecake in your honor. Sorry to bitch about the weight thing, but nothing worse than looking like a chemo patient all hollow eyed and skinny! If I can't keep the weight up I will definately check out the marinol link. Thanks. Best of luck on getting your port tommorrow, you will be so glad to have it.
Phyllis, how did it go today? Been thinking about you all day.
Catherine and Kay will be thinking of you all day tommorrow. Hope your chemo cruise is smooth sailing.
Linnie, I think alot of my weight loss happened after dx also. The stress at first and now with chemo queasies my doc just doesn't want it to get too much.
Bon Voyage everyone...have a good evening......Marsha0 -
Marsha girl, you crack me up;) We seem to have a very similar sense of humor. My husband was telling me today at lunch that he thought I should forego the wig and convince my coworkers that bald is the new blond;)Dont think I'll have the kahonies to pull that one off tho:0
Do need to post a new pix since I got a short hair cut Saturday. Ok girls, I will keep up the list as best I can. Because were so space constrained tho we may need to modify some of the info as we go so that there's room to post our countdowns to the end.
Take care everyone. You all just make my day!
Carynn
BTW - my name is pronounced as Karen. My dad's name was Cary and my mom was creative;)0 -
Good to read all the posts. Hard to imagine when I started this Feb group that we would have 37 on board the cruise. Sad that we are all here, but glad for the support. Carynn thanks for updating us.
It is snowing and turning to rain tonight and tomorrow. I have my port on wed and I am afraid things will get cancelled. I have chemo the next day. I can't imagine waiting anymore for all of this to start.
Some people have talked about diet restrictions. Are you told of any? Use to be back a hundred years ago when I was in nursing school no fresh fruit or veg-is that true? Someone else (can't go back a page now) asked about yogurt? I guess I will find things out on Thursday but wondering.
I see where people are using the biotene toothpaste, is that prescription? I looked all over for it and can't find it in any stores.
I do have some good news as we start out. A nurse from work stopped by to see me today in my office. She just finished everything-surgery, chemo and radiation. She was so upbeat. She only missed one and a half days of work the entire time on chemo. She went to work in the morning and left at two and had chemo. She was back to work every day. never threw up, felt nauseous once. Only real symptom she felt during chemo and radiation was a bit of fatigue. It felt good to hear her story and how she finished and it wasn't as bad as I have imagined in my mind.
Two more days to go!!
Karen0 -
Hi Everyone,
Good day today after my tea party on Wednesday. The day after chem was the best then on Friday I was a little tired but on Saturday I was dead tired. Sunday I was able to go to church and enjoy the day. Today I had a great day. I was able to go and get fit for a wig and get hats and scarfs. The ladies at the wig place says not to shave your head at all because it could cause infection and it could go into your hair fallicles. I would look into this before you shave your head try your hair dresser or maybe someone thats deals with wigs for cancer pts. I was really lucky to have my friend who is my hair dresser there for me to help me with all the decisions. Good luck and have fun. Remember to keep a good sense of humor with everything, laughter is the best medicine. Theresa0 -
SO i have not updated everyone on my chemo experience. The first day was rough. I think that my mind made me through up when I got home. I was very tired from all the pre-meds. The weekend I felt like I was preganant again with the metallic taste, nausea and a headache. Thank god fro my parents and sister who helped me out with my very active 22 month old. My husband has been working alot to compensate for the loss of my salary right now. Off the subject- New York has such a crappy disability payment. How do they expect people to be able to pay their bills with about 150 a week. Thank god I have help. It brings me to tears theough to think of all our sister (and brothers) out there that don't have anyone to pick up the slack. Now I am getting geared up for the second treatment on hursday 2/15 and I hope its better. I am wondering when my hair is going to fall out. I am not looking forward to wearing a wig. I feel so self conscious with it on. Like its screaminf" Look at me I'm fake" . I signed up for the LGFB class here on Feb 26th. Maybe I can get some ideas from there. I brought out the wig this weekend and my son ran so fast from it. I had to laugh. My appetite is all over the place. Sometimes I feel like no eating and then I feel like I can clear the fridge out. I gained about 2 lbs when I went to the doctor. I need to exercise because I needed to loose weight before all this and I would like to not gain too much weight if I can help it. So I'll let everyone know how I do with the next treatment.
I hope that everyone is adjusting to thei change the best way they can.
Kim0 -
Hi Ladies,
Catherine and Kay best of luck tomorrow with your treatment.
Theresa, I hate it when those tea parties give you a hangover:) I had'nt heard about the possibility of infection from shaving your head. Good to know.
Karen, my Onc suggested not eating any salads as it is difficult to ensure that you have cleaned each leaf sufficiently. She also recommended peeling all fruits to ensure that we can avoid infections from what might be on the skin.
Marsha, the steriods they are giving will probably build you up a little also. Eat whatever tastes good that day.
later...0 -
swimmingmom(karen) I found some biotene toothpaste and mouthwash at Walgreens today and bought it. I wonder if it can be used with the saltwater/bakingsoda gargle mix or if one is working better over the other as my NP gave me a brochure with the sw/bs recipe to gargle after meals to prevent mouth sores. Looks like biotene helps with the dry mouth problem.
So it looks like Steph and I will be starting our tea party this Thursday and a few others are on their 2nd round the same day? Anyone else starting the same day 2/15? Tommorow I see my surgeon and then my radiation doc.0 -
Ronnee -
Sorry you have to go on our "cruise" with us, but we welcome you! I saw you had one node with micromets - I do as well. Did you have the full axillary node dissection? I have not had (yet - they may still do) and I was just curious if you had it or not, and what your docs are telling you about it.
Thanks - Jen0 -
Catherine and Kay -- I start today with you.
I'm a little anxious. It didn't help that I got stopped for a speeding ticket yesterday! After I got the ticket, I burst into tears about how I had cancer, but the policewoman was not impressed. Maybe she will be when she sees my bald head in court -- LOL!!
My "tea party" is this morning -- I'll try to post later with updates and we can try to compare notes. I'm doing AC today, Kay, I think you're taxol. What about you Catherine?
Thanks to all the FCCs who've gone before me -- info very valuable.
Hillary0 -
Holy Cow - this group is growing. Thank you Carynn for updating. Hugs to the new gals - glad you found us.
Marsha & Hillary - I knew you gals were with me yesterday. By the time I arrived, I was perfectly calm (after getting another 80 cc drained). DD asked if I wasn't nervous - I said 'no, are you'? She says 'H*** yes - why aren't you scared?'. I said 'because Marsha says it's uneventful'. So, I think that's the power we have for our other cruisemates here - not to be underestimated. Thank you Marsha and Hillary for holding my hands. Today, I'll extend my hands to Hillary and Catherine and Kay (yes, you can have 3 virtual hands).
My experience - had some labwork required for the study, then off to my chair (beautiful place - 4 chairs per pod with curtains, private TV w/headphones (I'll take my own if I want to watch TV which probably won't be until the Taxol begins - AC too short), heated blankets, snacks, drinks, they order out for lunch and extend the offer to the patients. AC pushed for about 10 minutes, Cytoxan about 1/2 hour but got a stuffy nosed, sneezing fit about 20 minutes into it so they slowed it down slightly. Felt great. Ate a chili dog and chicken quesidilla for lunch. Then went to the LGFB program in the afternoon. Oh, and I drank tons and tons of water - got up 6 times during the night to pee. Took my Emend this a.m. and a Zofran and the steroids after I ate one of those 8 gm fiber Thomas english muffins. Will give myself a shot of Neulasta at 11:00. Quite drowsy still from the meds probably along with the Tylenol PM I took last night and the broken sleep (because of the bathroom calls). Otherwise feel great. Planning to work today as I feel but will snooze when I need to.
Karen - I got Biotene at Walmart. But, there's another thread somewhere (and I don't recall were) about chemo disintegrating teeth so I called my dentist last week and he wrote scripts for a mouthwash and toothpaste. He said the mouthwash was strong and not to use it more than every other day. I also plan to do Katherine's regimine of salt and soda at the bathroom sink and rinse after eating.
Leah - Loved the picture - it's great to hear from you again. I'm sure you're bracing for the snowstorm. I'm watching our local weather and we're to get 20". I may try snowmobiling a bit this weekend.
Wishing all of you well today - I'm going to get my work day started.
Hugs to all.
Phyl0 -
Good luck today Catherine, Kay, Hillary, and anyone else who is having a procedure. Let us know how it goes....
Karen, I found the Biotene at our drug store, Rite Aid ,(gum, toothpaste, mouthwash). I hear they have it at Target also but haven't checked there.
Theresa, I hadn't heard about the risk of infection from shaving your head so that was a good heads up. I keep changing my mind on what to do. I'm on Day 8 today and no hair loss yet but my scalp ITCHES like crazy and has since about Day 2 so I'm not holding out alot of hope that I'm going to be keeping my hair. Right now, I'd be happy to keep the eyebrows -- anyone know what % of people lose those?
I'm off to see the onc this morning and so panicked about what I'm going to hear regarding the HER2 test. I know I have to deal with the extra treatments if it's positive but I think I'll just have to have a little meltdown first.
love to you all,
Linnie0 -
Hillary....was wondering when you start. Our list didn't give a day for you. I got your hand today and Phyl has the other one. You will do fine. Concentrate on the little cancer cells going "ouch, ouch" as the chemo runs through ! Hugs to you.........Marsha
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Jan, I start on the 15th with you. Get my port as a valentine's day gift.
I guess I need to try walgreens for biotene. Not sure why they did not have it elsewhere
Kim good to hear from you. How is your little boy doing with all this? My onc told me to just walk for exercise. He also said it would help decrease fatigue. Not sure where you are in NY but you may get lost in a snow pile if you went outside walking. Maybe a treadmill!!
Leah, the picture is wonderful and it is great to hear from you.
Phyl, thanks for sharing your experience. Wow, going snowmobiling. Chemo is not going to hold you back!!!! How inspiring.
Karen
Retreat? Hell we just got here. (George Patton)0 -
Jen, Yes I did have an axillary node disection after the micromets were found in the sentinal node - 2 days after bilateral mast. My surgeon highly recommended that I do that and I was still in the hospital (from the bilateral mast) so it just seemed like part of the ride. (I'm not sure what I would have done if I had already been discharged.) The other interesting thing is that my surgeon informed me that they normally do not test the additional axillary nodes if only micromets were found in the sentinal node, just remove them. However, the surgeon/hospital that I was at still had funding and was doing research on axillary nodes when micromets found in sentinal node, so I was a candidate for the additional testing. The additional 11 nodes removed for me were negative. Even my surgeon disliked the idea of having to tell someone, I believe we should take them out but we won't test them and if you want them tested you will have to pay for it yourself- that kind of stuff drives me crazy. Luckily for me, that wasn't an issue but I feel for anyone that does run into that issue. Since I had them out I definitely wanted them tested and wanted to know the results.
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Well It finally started yesterday and is getting worse today.....The dreaded hair loss. I called the place where I bought my wig and they will buzz my hair today and fit the wig. I thought I was prepared for this, but it still brought a tear to my eyes today.
Ah well, I guess it means the toxins are doing their job:)
Best of luck ladies today.... We are with you stay tough.0 -
Hello fellow chemo cruisers -- I'm back from my first "tea" party. I definitely visualized Marsha and Phyl holding my virtual hands and it helped. I'm now visualizing holding Kay and Catherine's virtual hands -- hang in there girls.
I had a wonderful nurse who explained everything as she was going along. I don't have a port -- I've got good veins and will only be needing 8 treatments). She soaked my hand in warm water for a while to help the veins. I really didn't feel a thing -- and I'm pretty sensitive about IVs. She gave some premeds (for anti-nauseau) as well as some more ativan, which I'm also on orally. There were no problems with the adriamycin push -- I just chewed ice chips, which passed the time more than anything. The cytoxan was a half hour drip. During that time, a cancer center volunteer came in to introduce herself. Every new patient gets a pillow and a small quilt!
I warded off any potential quesiness with some Carr's Water crackers (my cracker of choice during pregancy) and sucked on one lemon drop. I feel a bit lightheaded and just the tiniest bit quesy, but otherwise OK.
Each person has an individual room with two extra chairs for visitors. Each room also has a TV with VCR and they have some portable DVD players. There's really not time during an AC treatment, but I'll take advantage of the entertainment options during the taxol treatment. The chemo patient sits in the regal recliner. I really felt like I should be wearing a tiara LOL!
The only problem was having to drag the IV pole to the bathroom. Will all the liquids I'm drinking (important for AC), I've got to go a lot!
I feel so relieved to have #1 under my belt. Now I guess I wait for the "wave", as it's been described.
Tomorrow I go back for a Neulasta shot. I then have the choice of going back for the shots or getting trained to do that at home. I'm nervous about needles -- can't watch when they stick me or anyone else for that matter, so I think that I'll go back in. It's only a 20 minute drive, and I've already lined up folks for the first three times!
Who's virtual hands need holding for tomorrow?
-- Hillary0 -
Hi Ladies,
Caryn Thanks for the updates, youre awesome!
Wildabouthorses I will be thinking of you while I am going through chemo myself on Thursday. They say I will be there 6 hours, you? Are you getting A/C?
Marsha It is nice to see pics of everyone, I agree. Where in FL are you from? Maybe you are near me in Tampa?
Freethought good luck tomorrow!
Narberthmom (Hillary) Glad your 1st went well. The Neulasta shot is given the day after? By the nurse?
Hockeymom Thanks for the encouragement for Thurs, where in FL are you from?
Leahrc good luck with your 2nd on thurs.
I am going to the LGFB class next Tuesday, I will bring my wigs (bought 2 of the same ones) Maybe I am too vain to go without one? Whatever, who cares. I dont care so much about what people think anymore, Im sure you can all agree. Still staying positive of course!! I came back to work yesterday after being off for 3 weeks. Work has been amazing and tells me to do whatever I need to do. I am lucky.
Thoughts out to all of you,
XO
Steph0 -
Hi girls, posted this earlier, it must have ended up in cyberspace somewhere, so here it is again;)
Tampachick, you're too kind. I'm just a computer geek who spends waayyy to much time on the computer!
Hockeymom, it hasnt happened to me yet, but hang in there. Picture the cancer cells using the hair as parachutes to bail on ya. Once their all gone, the hair comes back;) It's wonderfull that you found a wig shop that you like and that can shape and style for you.
Hillary, I'm almost jealous! Quilts and pillows??!! I will be telling my Onc that her facilities will be judged;) It sounds like it went well for you. I will keep my fingers crossed that you continue to feel well.
Good luck to all going thru treatment today. I hope you feel great!
Now for my update -- met the surgeon this morning (she's fabulous!). But I'm afraid that when this cruise stops in port, I'll be disembarking. Theres been a slight change in plans. We are going to do the SNB as soon as possible - any day now actually, just firming up the schedule. I'll also be getting a port at that time. A port for me was iffy, as remember, I was getting monthly infusions for my RA and I've become pretty used to being stuck (I rate/grade the infusion nurse!)But now since we're going in anyway, it seems like a good idea. Anyway, due to the surgery, I now likely wont start until March. So while everything that's happening for tx is a good thing, I'm bummed. I WANNA STAY IN FEB! I know that the March girls will be just as nice, but damn! I feel like I'm transfering schools in the middle of the year;)(do I still get invited to the reunion??) We all got our info at the same time, and emotionally, mentally, were on the same page. Sigh...I will continue to check in and see how everyone's doing.
Hugs to you all.
Carynn0 -
Steph, mine is A/C and I was told to expect it to be a 3 hour sit. I'm supposed to bring my Emend and take it there an hour before infusion. She told me all they were going to put in my iv but heck if I can remember it all.
Carynn don't you hate those little "detours" when you are already got your mind set on something else?
My surgeon wants to see me after chemo so as does the radiation doc so won't see them again till late May. The radi doc did say we may be able to move up my rads by a week once I take the last dose of chemo as I'd like to be able to go to my Mom's 80th birthday party.I haven't seen my family in about 6 years. She did say no jumping on the bike though for the trip!0 -
Hey gals, just checking in to say all is well on this 5th day post 1st tea party. Feeling great, went shopping then to my hairdresser who gave me the shortest cut I've ever had in prep for the 'falling out'. It's weird to see day by day what these powerful drugs are doing to the body. This morning I took a shower using my usual shampoo and conditioner and moisturizing soap--nothing new--And when I dried myself off within minutes I looked at my chest (what's left of it) and it was flaky, dried, ashey looking. I have never been this dry!! When I went to the ACS to pick out a wig, the young lady there told me that regardless of usual amount of oily/moist skin one has, chemo will definately dry you up so be sure to moisturize more than ever during this time.And not only your face!!
Angelflight , welcome on board! The port you have sounds like it's a power port with the valve that they attach a syringe to instead of poking the skin. Sorry about where your surgeon put it but maby that was easier to get to anatomy wise. I know it's sore but it will get better believe it. Mine is on my left clavicle area and for about the first week everytime I turned my head a certain way or ever made a certain movement with my mouth, the dang thing hurt like heck. I thought for sure he had put it in wrong. Now I forget it's there.
Dietary restrictions?---only to drink ALOT of water for the first 3 days, limit (not avoid) spicey foods and take senokot as needed. My doctor doesn't like to make blanket statements regarding diet or activity because she says everyone is unique. I see her again thrusday which will be 1 week post treatment and she wants me to tell her how I did and we'll go from there.0 -
Update --
Mild nauseau just kicked in -- about six hours after treatment ended. Took a compazine, as I've been told you've got to stay on top of the nauseau. I'll probably have toast and tea for dinner.
Waiting to hear from my fellow cruisers from today -- Kay and Catherine, how are you doing?
Freethought and Lulu (Linda #3) -- how did your port placement go?
Good luck tomorrow on those getting ports (Karen) or starting chemo tomorrow (Catherine and Freethought).
Pat -- did we miss your birthday on 2/11? Happy Belated Birthday!
Sorry if I missed anyone ...
-- Hillary
Keep chugging that water!0 -
Hillary, are you still peeing red? I had drank so much I stopped passing red in about 6 hours. So glad you breezed through (mainly). That compozine will make you sleepy, also drink ginger ale. I did the ice chips also. Wow your accomodations sound just so 5 star! I'm jealous.
Pat, glad you are feeling great. How do you like your new cut? I found I like my hair short way better than long.
Jan, you should definately try for your trip to visit mom. But not on the motorcycle perhaps.
Karen, I love your tag quote of Patton!
Are you getting geared up for Thursday? Good luck on that port tommorrow!
Steph, I am going to the LGFB class next Monday. FREE make-up (I heard the good stuff) Wait and see how you feel about going out in public. I'm gonna get some self tanning to make sure my head isn't white against my tan skin.
I am up in Ocala, 90 miles from Tampa. Maybe we can plan a get together, meet half way or something for lunch?
Phyllis, so relieved you did good and I love your postive attitude! Glad your DD was there for you, I took a girl friend and that was so helpful. Speaking of tea! My onc nurse told me today absolutely NO green tea. It is full of antioxidents which makes cells grow and divide. She said we are trying to kill the cells, not help them thrive. She was glad I drank alot BEFORE chemo and can again AFTER chemo, but not now. That actually goes for anything known for being a strong antioxidant. Back to my coffee in the morning. I didn't care for the taste anyway.
Jel, sorry about the hair, looks like you will be the one reporting on that first.
Catherine and Kay, we are anxious to here from you. Hope your sailing was fine.
Carynn, NO WAY YOU CAN LEAVE Who is going to keep up with our list????? Maybe you will be at the end of Feb or first of March. You would only be slightly behind us, some only a week. Just think of all the advice you'll get. Please consider staying with us.
I fired my oncologist today. Yep, gave him the ole boot. Threw myself a nice little fit. And believe me, I am damn good at it when need be. Now I have the doc who started the Oncology center, Dr. Main Man. Very pleased!
OK gals, good evening to all, dream about smooth sailings. Hugs, Marsha0 -
Linnie -
I think you and I both started on the 6th? I too have had funny feelings on my head since about day 3. My head kind of went numb a bit, but no itching. I did notice that a few more than "normal" hairs are starting to fall out! I did get my hair cut short just to make the transition easier!
The wig shop gals told me by day 14 - hair usually all gone! So next Tuesday - oh boy! I am more nervous about that than almost anything else, I swear! Ugh!
Jen0 -
Marsha -
You fired your onc?? Wow! Must have done something to tick you off apparently - maybe I missed that post!
I also seem to have the luxury cabin on this cruise! When I go for my tx, I have a private room with a couple of visitors chairs, TV and a fairly comfy lounge chair! They greet me with nice warm blankies too! They have all kinds of snacks and drinks and goodies for both me and my DH who comes with me. They even come in and ask what you'd like and GET IT for you! Nice to have someone wait on me!
There was a volunteer that came to see me as well while I was sitting there - brought me a quilted tote bag, and I got a choice of a quilt as well! I was so stunned, but they are beautiful! My 11 yr old daughter loves the tote bag, and I think is planning on acquiring it!
I have to admit, I kind of laughed - and said WOW! so there are a few PERKS! for getting cancer! Who'd know!
Jen0 -
Walmary by me had both toothpaste and mouthwash. If anyone needs it, I would be happy to mail...
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Hillary, I hope the pill kicks it for you. After all, what fun is a cruise if you're sea sick. Do check in in the morning and let us know how you feel.
Jen, I hear you. Probably because this board has as much if not more than one needs to know about treatment, I find I'm most anxious about hairloss. Not freaked, more like pissed;)
Marsha, sounds like you had a really busy day. Fired the Onc, huh? Hope you like the new one. I think thats really important. So far, I love mine. See her again tomorrow.
As far as staying with the Feb gals, I'd be happy to if you all dont mind. I'll know more tomorrow, but the Surgeon is all for the chemo first protocol and is working hard to get my surgery this week or next. So, I'd probably start the 1st or 2nd week in March. And yes, I'll be happy to update the list. Maybe that's a good thing. And speaking of the list, if I've missed anything, or if you want something added, plz PM me and I'll take care of it. I'm afraid as the posts grow, I might miss someone. After all, every cruise has a passenger manifest:)
Have a great nite all.0 -
Hey, I am at day 13 and haven't lost a hair! AC is my cocktail.. maybe Italian hair is stronger somehow????
0 -
Everyone I saw the surgeon on the 12th. I do not get my port until friday the 16th. they are putting it in my chest on the right side. I need to get the treatments started. this ship has been in port too long. Time to begin the journey of the unknown.
LuLu0
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