TRIPLE POSITIVE GROUP
Comments
-
Congrats Melster!!!
0 -
Thanks you guys. I'm happy yet freaked. Won't see my MO again til end if Dec. Kind of surreal!
0 -
Thanks you guys. I'm happy yet freaked. Won't see my MO again til end if Dec. Kind of surreal!
0 -
Congrates Melster!!! great news.
Hope Jenn is doing ok.
0 -
ang7894 - How's the tamoxifen going - I see that you recently started on it.0
-
Jennifer-Emend was amazing. I had to start taking it after my 3rd round and I had absolutely no nausea.
My kids were 2, 3,13 and 18 when I was dx. So I know what you are going through. It is very challenging. But, I actually found that having kids is what kept me out of my funk. I had to put on a decent face so they didn't worry. Fake it till you make it actually helped me.
You are almost done, hang in there.
V
0 -
melster - yay! Happy but freaked describes almost all of us, lol!
tonlee - have you checked the BX for PB2? Maybe people don't know to look for it there. I think the commissary will order by the case for you too - at least they used to. You can also order it from Amazon.
0 -
Hi ladies! Thank you all for the words of encouragement! I needed it more than you know. I wish I could say things got better last night...I was violently ill all night and went into the cancer center today for fluids and anti nausea meds. Still feeling sick...but, not actually throwing up now. I have been laying in one position for hours hoping it will pass. Turns out I might have a bug, at least that is what the nurses think. Might explain why the anti nausea meds are not working? I did not get a new prescription for anti nausea meds yet but I am working on it.
Hopefully tonight and tomorrow will be better. Not looking great.
Thank you all again. This has been a low point for me in tx...but, you all have helped me so much. You all inspire me greatly.
Any word from Jenn? Hope her surgery went well.
Congrats melster!
Ashla, the music is beautiful.0 -
Jennifer - I hope you get a good nights sleep tonight.0
-
Jennifer are you getting Nuelasta? Really stinks that you got a bug
0 -
Jennifer, I hope you feel better. I SN glad you went to the ER, dehydration is the pits.
Jen, I hope you are doing ok and healing, TAKE the pain meds!
Melster, yay!!!.herceptin done is awesome!
To all, much love0 -
Jennifer, I hope you feel better. I SN glad you went to the ER, dehydration is the pits.
Jen, I hope you are doing ok and healing, TAKE the pain meds!
Melster, yay!!!.herceptin done is awesome!
To all, much love0 -
Jennifer, I hope you feel better. I SN glad you went to the ER, dehydration is the pits.
Jen, I hope you are doing ok and healing, TAKE the pain meds!
Melster, yay!!!.herceptin done is awesome!
To all, much love0 -
Meister...congrats on being done...hard to low how to feel isn't it?!
Tonlee, I found the pb2 at a couple places near me. DD was home before leaving for Thailand and already knew about the stuff. She took my unopened one pound package with her, just in case she had food cravings while there.
Regarding nausea, I didn't have too much, but I had both decadron and aloxi (supposed to be for nausea) in my IV at each session. What nausea I did have seemed to respond to zofran.0 -
Oh Jennifer, so sorry that you are having to deal with a bug on top of everything else. Prayers that this will soon pass.
0 -
Awwww Jenn....I was one of the fortunate ones who had no nausea issues. They gave me decadron and Emend . I took my first of 3 Emends as soon as chemo started and for the next 2 days. Decadron in the evening chemo night and every 8 hrs for 3 days..
Congratulations Meisler ! Hopefully me in a few weeks too. Lots of deportation this month!0 -
Hi Ladies! Wow, it's been busy the past few days. Trying to catch up. Welcome to all the newbies. I think I am still considered a newbie too and these ladies are a great support and a wealth of knowledge!
I have a had a crappy couple of days. I started PT, and this is the high point of my week. She is amazing and is showing LE precautions and massage. Will work with me in a couple of weeks to strengthen my obliques and back because, yes, I had the non muscle sparing tram. She herself is young and active and assures me she can get me back to my hall running days as a nurse. Lol!
Now to the crappy part. I am using the VA system, so keep that in mind.I had my first appointment with my oncologist. First time meeting him. And I just don't know....he is very knowledgeable and gave me his private cell. So that's good. He told me he is recommending TCH (even though I knew that, sill cried), 75mg texotere. And TC x6 cycles and hercepton for a year. He said no precautions and no scans. ??????? Then lead me over to the room where they do chemo. Sat down in a chair in the chemo room, with all men around (VA system), and the nurse came over and gave me a pretty pink bag (barf) with chemo drug info and such (wrong drugs that doc is putting me on) and a binder with contact info on it and scheduled me for my first chemo appt with power port install ( 'hopefully they can do it that morning or we wills use a vein, but we won't be ale to tell you until later').
I am getting a power port, yay! But a little scared too. I told her I wanted to ice and she said she had never heard of that. My dr had never heard of it either, but said it was okay. I am not doing cold cap. I just don't have the patience. The nurse said I shouldn't lose my hair. ???? That it will only thin out. ??? Should I prepare and just shave it off and when?
Sorry to rant and rave ladies. I am just a tad freaking out and a little weepy. I knew it was coming, but still didn't ease the blow.
Going for some retail therapy in a bit here. Will check back before I leave.
Jennifer- I pray your feeling better.
Jenn- yes! Take the pain meds, and know that each day gets better. Pray everything went well. Look forward to hearing from you.
Melster-congrats! I am looking forward to that day!0 -
Hi Ladies! Wow, it's been busy the past few days. Trying to catch up. Welcome to all the newbies. I think I am still considered a newbie too and these ladies are a great support and a wealth of knowledge!
I have a had a crappy couple of days. I started PT, and this is the high point of my week. She is amazing and is showing LE precautions and massage. Will work with me in a couple of weeks to strengthen my obliques and back because, yes, I had the non muscle sparing tram. She herself is young and active and assures me she can get me back to my hall running days as a nurse. Lol!
Now to the crappy part. I am using the VA system, so keep that in mind.I had my first appointment with my oncologist. First time meeting him. And I just don't know....he is very knowledgeable and gave me his private cell. So that's good. He told me he is recommending TCH (even though I knew that, sill cried), 75mg texotere. And TC x6 cycles and hercepton for a year. He said no precautions and no scans. ??????? Then lead me over to the room where they do chemo. Sat down in a chair in the chemo room, with all men around (VA system), and the nurse came over and gave me a pretty pink bag (barf) with chemo drug info and such (wrong drugs that doc is putting me on) and a binder with contact info on it and scheduled me for my first chemo appt with power port install ( 'hopefully they can do it that morning or we wills use a vein, but we won't be ale to tell you until later').
I am getting a power port, yay! But a little scared too. I told her I wanted to ice and she said she had never heard of that. My dr had never heard of it either, but said it was okay. I am not doing cold cap. I just don't have the patience. The nurse said I shouldn't lose my hair. ???? That it will only thin out. ??? Should I prepare and just shave it off and when?
Sorry to rant and rave ladies. I am just a tad freaking out and a little weepy. I knew it was coming, but still didn't ease the blow.
Going for some retail therapy in a bit here. Will check back before I leave.
Jennifer- I pray your feeling better.
Jenn- yes! Take the pain meds, and know that each day gets better. Pray everything went well. Look forward to hearing from you.
Melster-congrats! I am looking forward to that day!0 -
msTori im surprised the nurse said you would not lose your hair...never heard of that. Hate to be a downer here but you will lose your hair, i think its important to know that so you can be prepared. I cut mine super short before and it did make it a little easier to lose. I still cried when the big pieces started falling out but honestly, you deal with it and move on. I wasn't as devestated as I thought I would be, I was just so focused on getting through chemo treatments
I iced my fingers and toes during taxotere - my cancer ctr does this all the time. It helps with not losing nails.
don't be afraid of the power port, yes it is a little uncomfortable when you are doing the procedure and for the first week but you forget you even have it by the second week. IMHO i don't know how her2 ladies go without, between chemo and all our herceptin infusions that is a lot of strain on your veins
good luck and you will get through it!
0 -
MsTori, I didn't have TCH, so not sure about hair loss for that, but from what I've read on here, all of the typical first line chemo cocktails for BC do cause hair loss and not just thinning.
I freaked out when they showed me the chemo room too - I think it was just the reality of it getting thru to me, that it was really bad and not something that would have a quick fix. You're right - its like a blow you should see coming, but you just don't.
That said, the anticipation of chemo was the worst part for me - I made myself sick with worry and the big D for weeks before. But once it started, even tho the AC gave me stomach problems, I felt better mentally than I had while waiting for the chemo to start. I think it was because I was actually doing something to fight it. Probably why i have the post-treatment blues now.
Hard to feelthe this way now because chemo is so freaking scary, but you will be ok. You will see that you are stronger than you ever imagined you could be.0 -
Forgot to mention- I loved the Tampa VA. I am using the Gainsville VA for oncology, so was an eye opener. Not all VA's are equal. I am still feeling this VA hospital out.
0 -
Ms. Tori There is a very slight chance your hair will just thin or not fall out but don't count on it. The SE for both Tax and Carbo is hair loss so my bet is one of them will make it go. Give that your nurses seem to be giving your incorrect info I would always double check with my onc. We all work with they system we have. My onc & nurses were great but OMG the support staff was clueless and made some really big mistakes that I caught. So yes even in the private sector this can happen.
Port is a piece of cake after the surgery you just had! You'll do just fine.
0 -
MsTori - I did TCH and my onc PA said my hair would fall out on day 14. Seriously! I used the elastogel cold caps only during the taxotere and I lost a lot of hair but it came back in fast. Are you getting your first chemo the day of port placement? You could consider putting a couple days between those two events just to give your body time to adjust. When they placed my power port the nurse pulled out the IV from surgery and was talking to another nurse distracted and the next thing I knew my hand and wrist were full of blood on the inside. It was painful for a couple days so I was glad I had some time to recover before chemo started. PS-now I KNOW to put a lot of pressure on the insertion point myself when any needle is removed.0
-
I had my chemo the day after my port placement (less than 24 hours). They would have done it the same day but there wasn't a chair available. I would have had no issues doing it as soon as I left recover. Actually the surgeon came to talk with me after and he was shocked to see me already fully dressed and sitting in a chair. My husband wasn't even allowed in yet!
0 -
Wow! I will call all of you my angels. Thanks so much for being here. When I went yesterday to meet my oncologist, the part that threw me was he said don't take any special precautions. ie: fresh fruit, veggies, masks, ect. In other words, go about your life as usual. And that he prefers the power port to be put in and used.
The nurse was really useless. Forgive me, but as a renal nurse, I would never counsel in public place, ESP new patient. She said she will see IF interventional radiology can put my port in on Oct 12th, and then I could get my chemo same day. Otherwise, they will use a vein.
About the hair loss- she said my hair shouldn't fall out, just thin. I think because the VA is 90%males, she is used to working with older males and perhaps they don't have a lot up top to begin with. Idk, just from looking around the room. And she had never heard of icing at all. Both my dr and her seem to think I will only have minimal issues with nails. NOT taking any chances. Lol! And I would prefer to cut my hair before...don't think I really want to find it on the pillow in the morning.0 -
MsTori - I met with the onc PA in an examination room and she went through all the possible side effects of treatment with me. She explained everything. She sent me home with papers for each chemo and my teenager was in the car with me on the drive home and started looking at the papers. She suddenly says 'Mom, are they treating you with hampsters?!' Sure enough, I looked at the printed sheet for herceptin and apparently it had autocorrected to hampster! We had a laugh over that!0
-
That's what I love about this board. I know I will hear the truth and I am a person that wants to know. I don't like going in blind. And the nurse can say whatever, but you ladies have been through it and your word is golden. And the support is awesome. Thank you so much.
I'm going for some retail therapy now...I love to shop! Always helps to make the medicine go down a little easier. I'll check in later.0 -
Omaz- ahahaha! Thanks for the laugh! I needed it! They gave me info on andriamycin. Lol! That was helpful. Nothing on TCH. But it's all good, I have the info from you ladies and this site. And I love researching everything.
0 -
MsTori if you are getting the Nuelasta shot then that's why no precautions. I was told I could even eat sushi… and I did.
My building engineer just got dose dense chemo for some type of colon cancer. He did not lose his hair. Some chemos don't make you lose your hair. Most of us bc gals get the strong stuff. TCH is one of the strongest. Chemo kills fast growing cells like your hair… but also will kill those fast growing high grade HER2+ cancer cells too. So its a good thing.
0 -
mstori - my first thought was because they are treating older men predominantly they don't show the hair loss, that is funny! There were a bunch of men being treated at my center and they all had hair so maybe some of the colon and prostate chemos don't cause hair loss but TCH does. I never went shiny bald but I definitely lost my hair. Nobody iced at my center, except ME! I asked my MO and he said sure but the nurses kind of shrugged. I used 4 bags of frozen peas and brought them in a cooler. I also brought a Tervis cup with crushed ice and kept it in my mouth during Taxotere. I know the nurse in you will check each bag of IV meds before they hang it, but the nurse at the VA sounds like a fool. Just be a hawk and check everything twice - or better yet, I'll drive to Gainesville and watch them like a hawk! Seriously, I would totally do it! I cut my hair short after surgery and before chemo and had a hairpiece made from my hair (www.hatswithhair.com) also bought a wig and took it to my hairdresser and she trimmed it so it looked like my hair. Got a stretchy cotton scarf from 4 women (beau beau scarf), and there are a couple of places that will send you free hats and scarves, franceluxe and gailafund I think.0
