Calling all TNs

mags20487

Lost my nephew the same way Lauren 4 yrs ago...hugs to you it must be so hard...

Had pet scan Friday will know results Tuesday when I see my onc.  She assured me at last visit that according to blood work I was done with periods....well got it now so there goes that theory.  Gonna tease her that I am pregnant due to her advice that I was safe!!..should be fun will keep ya posted. 

Welcome newbies...hang in there and you will be looking back before you know it

Maggie

OBXK

I managed to get my hot little hands on my CT report. Liver mets reducing. Chest node stable. Woo Hoo! However I have a lung nodule and T6 lesion, that were not on my Sept. PET/CT. So, I'm thinking that my oncologist will keep me on my current combo and scan again after the next 3 treatments.

Lauren15

Just found out my protocol starting Thursday will be TAC every 3 wks x 6.

I'm too tired to go through all the posts.  I can barely stay awake.  In a nutshell, what am I in for?  Is that harder on the body than the other cocktails?  I plan to take whatever is dished out, I just want to know!

Thanks!!!!!!  Lauren

jenjenl

It's what I get - I have my 2nd one tomorrow.  Dehydration was my worst part so I now get fluids the three days following my infusion.  When I get the T chemo they ice my nails during it to prevent them from falling out. 

TAC was hard (bone pain, inability to sleep from the steroids, unable to drink enough or eat) on me but I was coming around day 5, then got a cold and fought that for 2 days then by day 8 I was ME again, laughing and smiling.  I was not able to care for my kids those first 5 days, they are somewhat fuzzy (I talked to my boss in those 5 days and didn't remember, I just said I hope I didn't let anything out of the vault). 

Everyone is different- many women have TAC and are running and walking miles right after.   I lost my hair day 18 post chemo #1.

I will know if the adjustments they make are helpful for me.  The adjustments are fluids and having percocet, Tylenol didn't do shit on my pain from the nulasta (sp) shot. 

LuvRVing

JenJen - are you taking claritin for the neulasta pain?  Take it for about 5 days, it usually make a huge difference.

Loafer

I also have to give a shout out for Claritin. I just had my neulesta shot yesterday and NO bone pain! I was immobilized the last shot and spent 48 hours in bed with severe head to ankle pain - which Tylenol did not touch. I don't know what's in this stuff - but I'm a believer!!!



I just finished my final treatment on Friday and had serious constipation. It seemed to build with each treatment and I didn't pay much attention. Onc said it was the pre-meds for nausea. Spent four miserable days following the constipation protocol and ulmost needed the enema. It was worse than child birth. Pay attention to all of these things to avoid what I went thru.



Hugs to all you ladies on this journey!

jenjenl

re the claritin i did do it for the day before the shot and 2 days after maybe I need go for a full 5 days....another adjusment   Thanks for the tip

liv-

hello sisters,

today had my follow up results for bloods and ct scan..

all good, large nodes on chest shrunk by 80% and the mass of small nodes almost invisible.

the surprising thing was my bloods, they were excellent and he was surprised that they were as good as they were,.  so for now im happy - but dont trust the nasty critters...cancer sucks!!

lauren - everyone reacts different, im on xeloda and navelbine and have had hardly any side effects and others have had heaps. for me tac was hard at the beginning just like jenjen says i was pretty much the same.  third day complete fatigue and joint aches and dehydration. nearly developed pneumonia after 2 weeks when treatment finished, ended up being a blood clot.

after 2nd dose i got the hang of it and knew exactly when to surrender and started to drink gallons of water and knew i had to have complete rest & before i knew it 6 treatments were finished.  doable for sure. 

just go with it and expect bits of what  jenjen i had and most of all surrender when you feel bad, you will come good.

luvRVing - thx for tip claritin, must remember if i needed.

loafer - either its diarrhoea or constipation, i got the constipation and its just the pits,

ladies dont suffer or let it go too long its just not worth the anxiety and pain, more than anxiety.  i take dulcolax, they always do the trick,  never have failed me.  Have to take them every couple of days otherwise i dont move, their a blessing, don’t suffer girls.

xx

Lauren15

Thanks for all the GREAT tips!  A few more questions:

When do I start taking the claritan and for how long?

Nausea meds:  I was given prescriptions for Zofran and Compazine and to take as needed.  I'm going to get Emend in the IV.  Is there anything else I should know?

Pets:  Any tips on that?  I have 3 dogs and a parrot.  I heard not to clean the cage or the bird stand, but the dogs are velcroed to me and sleep in my bed.

Nails:  What do you recommend for icing them.  I have a small cooler but haven't purchased anything to put in it yet.  Manicures/Pedicures - do you go to a salon, have someone come to your house - I'm getting the gels removed and going to use shalack instead.

thanks sooooo much!

mags20487

OBXK--horray on your good news.  I get my pet results today so fingers crossed...save a dance for me

Maggie

liv-

yr welcome jenjen ((hugs))

dont know about claritin but sure luVRing will give the heads up.

Nausea meds, they give you steroid meds to take at home before each dose of chemo.,  you will have nausea meds to take whenever you feel the need throughout the treatment.  not everyone gets sick or has diarrhoea, fingers crossed you dont either.

Pets:  yes supposed to keep yourself extra hygienic but seriously i have 2 pooches that are also velcroed to me and as long as you wash your hands after patting or cleaning you should be fine, i had aqium an antibacterial sanitiser placed everywhere and used it constantly at the beginning but it dried my hands out too much with the chemo so  i bought some natural soaps and used them constantly.

Nails:  ive always had acrylics on but had heard of the blackening of nails so for the first time in 15 years took them off and im glad i did because i did get aching toenails and my  finger nails were sore for a while, all good now except for a bit burning on new chemo xeloda & navelbine.

wouldnt recommend doing too much in a salon for nails as there would be a lot of bacteria.

the cold water theory is around for nails and hair. i know some people use cold water caps whilst having chemo to try & prevent hair loss.  my advice is dont try and save your hair, i tried to keep mine when it started to fall out on the 12th day and stressed myself out so much it was not worth it.

when i did shave my head i had already got the wigs in advance and it was a huge relief once i chopped it all off. dont suffer trying to save it,  you will only get more anxious.

just think in a few months it will all be over and somehow you learn to go with the flow, at first its just horrific to even try and comprehend the next 6 months but you sound so positive & i know you will be fine.

xx

LuvRVing

Lauren - take the claritin the night before your injection and then for 4 more days.  As for nails, I didn't ice mine at all.  There's no way I could sit there with my fingers being iced.  I kept them polished and didn't have a problem.  As for mani/pedi advice, shellac polish involves scraping off the polish (or lengthy soaking in acetone - my salon doesn't seem to have the patience for the soaking and they do it for just a couple minutes then scrape away.)  I find it has weakened my nails and so I'm not going to do it for a while to see if my nails stop breaking way down in my nailbed.  Regular polish for me.  Be sure your salon is using sterilized equipment.  Better yet, buy your own and have them use it.  You don't want an infection from a contaminated tool.  I don't remember if you're getting taxol or taxotere.  Taxotere seems to be harder on nails.

Pets - talk to your doctor about it.  If you have no help, I'd wear a mask and gloves for cleaning the bird cage, picking up any poop or cleaning a litter box.  If someone else can do it, great!  As for sleeping with your dogs, I don't think it's a problem.  If I had one, it would be sleeping with me!

Mostly, know your blood counts.  If you're very low then you need to be extra-cautious.  Otherwise, just take normal precautions.  That's the advice from my Dana Farber oncologist so I think it's a good approach.

EnglishRose75

OBXK, so glad for your good news.

This radiation business really brings new meaning to the phrase "hot boobs".  Feel like I could fry an egg on mine right now. Four down, sixteen to go...

mags20487

pet scan all clear and tumor markers are back into the normal range again!!  woo hoo

Maggie

LuvRVing

Yay Maggie!  That is fabulous!

kathyrnn

Hi Ladies, I popped in to wish you all a Happy and HEALTHY New Year.



Hello to all the newbies I haven't met. This thread was the best thing I found after my diagnosis.



Life has gotten very hectic, I had been working like a dog getting my Aunt's house ready for sale. Just when I could start to see the light at the end of the tunnel, a tree fell thru my house. (My uncle gave me some great wisdom. He told me when you think you see the light at the end of the tunnel, it's often the train that's about to hit you!)



The tree thru my house was a reminder of God's sense of humor. (Geeez, BC wasn't enough???). The one room in my home that was completely renovated was the bathroom. (My Dad remodeled the whole room when we bought the house). The tree that fell is directly dead behind the middle of my kitchen. ( that end of the house needs a new bow window and a chimney repair). The tree literally went sideways to fall and take my whole bathroom out. (My pearl of wisdom for this year is: When you walk into your house in November, you haven't decorated for Christmas, and your house is filled with smell of Christmas trees......you have a big problem!)



About a week after the tree fell, God proceeded to keep showing his sense of humor. I was at my Aunt's house on my hands and knees scraping rubber adhesive off a wood floor. Since I wasn't able to attend Mass, I listened to it on the radio while I worked. The priest gave a sermon on "gratitude". (I'm big on practicing gratitude). He said "if you got up today and can see and hear, be grateful". As I'm prying rubber off the floor with my raw thumbnails, I say "I'm grateful God". He said, "if you have food today, be grateful". Again, "I'm grateful God". He said, "if you have a roof over your head, be grateful". I shot the radio the death stare...and said "okay, now your screwing with me God!". Apparently God didn't appreciate my sense of humor, because when I left my Aunt's house, (after 16 hours of dog labor). I turned on my car, and my windshield cracked from side to side. (My insurance company must love me, lol)



Luckilly, I'm down taking care of Mom at her house. (Still waiting for my insurance company to settle the claim). Mom spent the holidays in the hospital. (Please don't get me started on the quality of health care ). She has reached the level of almost total dependence.



So ladies, you are always in my prayers, I'm just busy swimming with alligators and dodging crocodiles, waiting for the next shoe to drop. I don't post, but I'm lurking when I can. Keeping you all in my heart.



I may have missed a post, but has anyone heard from Inmate?

LuvRVing

Hi Kathy!!!  So good to hear from you!  I can't believe you're still waiting for your insurance to cover the tree damage...that's horrible service!  I know there were lots of claims, but still...

No word from Inmate in a very long time.  She has a Facebook page that someone checks on, but we haven't heard an update in a long time.

I hope life settles down for you and that your mom is comfortable.  And that you're squeaking in some fun every once in a while.

Love and hugs,

Michelle

liv-

maggie u little ripper - mine too, today scans/bloods were all good, celebrating with a glass of red.

xx

liv-

obxk just having a laugh when i read 'you got your hands on report'

well today i got sprung, before i had my bloods done i wrote all these marker tests that i thought would be useful, cea, ca27-29 & 2 others that i cant remember now, already had the ca15-23 on there.

when the bloods detective had a look at the paper, he asks, what this?, he was referring to two of the marker tests i had placed, shrinking in the chair, he proceeds to tell me that he is going to ring my onc to see what it was supposed to be because one he had never seen before and the other one was for   prostrate cancer and looks at me with 'wtf'.   his off sider could tell  im the culprit as im just about to pass out with shame and tells him "dont worry about it, just cross them off' saved!

guilty!

mags20487

Inmate posted a pic on FB on Dec 29 but nothing else since  I think of her often...what a fighter she is!

Maggie

jenjenl

LIV and MAGGIE - I am so happy for you, what exciting news....big sigh, nice glass of wine and just so happy and proud of you.  Keep it up.  xoxo

Lauren - at my infusion the lady brings the containers with ice and water.  I don't bring anything.  I personally would not go to a nail salon unless it was of high quality and I would still bring my own equipment.  I know my chemo class lady said they can not use the cuticle clippers (fear of clipping too much, bleeding and plus infection) or the devise that looks like a cheese grater it has to be the stone.  Regarding the dogs - I have 2 kids, 2 dogs and 2 cats (two too many asses IMO) and have not changed anything aside from washing the dogs bi weekly now vs monthly and my dh changes the litter box and the kids are just germ bombs so they wash their hands in the car with the wet wipes and then change their clothes when they get home and wash hands. 

Back from chemo round 2.  I was dehydrated to start so got fluids today - then again the rest of the week.  My BP was low so he wants a full week of BP results to determine if we need to reduce the dose...I hope not I want to hit this shit head cancer as hard as I can.  MY WBC were higer than the 1st round so that made me happy.  He does want to talk to be about being anemic.  I have always had issues with it, especially when I was pregnant both times.

Probably won't be online much but will catch up soon.  Chins up my friends!

OBXK

mags- So glad you had a good report. Go bake yourself a cake!



Kathy - Please don't tempt fate by saying "what next". I hope your world calms down soon.



liv - That cracked me up. Nice try!

liv-

thx jen ((hugs)) you sound very much like me as far as treatment, really tough chemo your having and like you i was the same,  completely dehydrated after 2nd dose and became very emotional because i couldnt settle down, it was almost like i was manic and collapsed eventually through exhaustion.  then i learnt after that 2nd treatment to stop everything and just rested and knew exactly what was going to happen on what day. again same as you my blood pressure was so low but they wernt too concerned and let me have chemo. 

it will be over soon, you know you can do it so darling just rest and drink heaps of fluids and go to bed with a full water bottle of whiskey, no only joshing water and perhaps pop a hydra lite tablet in to replace the electrolytes.

take care and be gentle on yourself.

xx

Lauren15

I feel like that too about the chemo - bring it on!  I hope my body can handle the TAC that starts Thursday.  I want to hit that sucker with everything there is.  I think it's a strong cocktail that I pray works.  I have no clue what plan B is, and I hope I don't have to find out.  My BP is normally low, and I get dizzy easily if I get up too fast, so I guess I'll just have to see what happens.  I had 3 quarts of water measured out today to get myself hydrated, but I barely had a few sips.  Tomorrow I have surgery for the port, so I won't have the opportunity to even drink anything until after 2 PM, and I'll probably just want to sleep.  Basically, I will be going into my first chemo dehydrated, so I pray they give me fluids first, during, and afer.   I am SO NOT a water drinker.  I can barely get through one water bottle even when I'm working out.   As soon as I drink water, it's like there is a straw in me, and it goes right through me.  Those muscles down there don't work as well as they used to, and I need to RUN, so I've really try to avoid water.  I might as well just live in the bathroom from now on.  I was actually planning to have that operation before I was diagnosed with BC.  Wish I would have before this.  It would have been easier to drink.  I just hope I lose some weight through this all.  At least that will be a plus!!!  Do most people lose?  I'm hearing of weight gain from steroids, or is that just temporary? 

LuvRVing

Lauren - I lost weight on chemo and I am losing with weekly Carboplatin.  The problem is I don't need to lose weight.  I get just a small dose of steroids so it doesn't affect my appetite.  As for liquids, drink anything, eat melon, frozen juice bars, etc.  Try not to go into chemo dehydrated.  IV fluids will help and you'll get some, but drink anything and chew on ice cubes during your infusions.  Good luck with your port surgery - when I had mine, I walked out of the hospital and went out for lunch.  I felt just fine afterwards.

MichelleV

I'm new to this and hope I can still join you ladies. I am 45 and was diagnosed September 28th. I had a lumpectomy, sentinel node biopsy and port placement on October 19th. I had 4 rounds of AC every two weeks starting November 7. I had my first taxol treatment on January 2 and have 11 more weekly. Going for my second treatment tomorrow. Radiation will follow.

When I first heard TN I was scared but this site and you ladies give me hope!

I have a 17 year old daughter and 9 year old son. I will beat this and be here for them.

Hopex3

OBXK ...good news for you! Yay!



Lauren.. I would stay away from the salons. It's so hard cause I'm one of those that gets a pedicure every 8 weeks. But because of bacteria, I've been told to stay away. I've been using Sally Hansen's hard as nails and so far my nails are ok.



Michelle..welcome to our group. TN is scary, however, I have met so many people lately that are either TN or they know of someone who is and they are all doing great.



Liv...Funny story!! Congrats on your scans too.



Mags...yahoo for you too on clear scans!

Cocker_Spaniel

Hi Ladies

I'm now back from my holidays worse luck and back to work. 

For all you ladies who have lost a child you have my heartfelt admiration in the fact that you still keep on going through life and what it throws at you.  I don't think I could if I lost one of my girls.  I can only imagine  what you all went through and that is probably an insult to you because it is probably a thousand times worse than what I imagine. You are all an inspiration to me and it's a priviledge to know you all.  

I went to my friends funeral today that we lost through cancer (Lung).  She lost her only two children to a berry aneurysm and cancer a few years back and every day since her first child, a son died at 23 yrs she has cried for them.  Her daughter died two years ago at age 22 yrs with cancer and every single day she has had a smile on her face because she didn't want people to pity her but when you looked into her eyes  all you could see was the complete sadness. She always said if she got cancer she wouldn't fight it because she wanted to be with her children and that is exactly what happened.  No treament when diagnosed in August and now she has passed away.  I couldn't even cry at her funeral because I knew this was just what she wanted and was now happy.  There was two little doves sitting on a power line and I thought that is Kellie and Daniel come to take her home.  My friend always loved butterflys and just as I saw the doves so a monarch butterfly flew all the way through and around the crowd of people so I knew she was at peace at last. 

Karen and Mags great news on your results.  Way to go girls, keep it up.

As for the icing of fingernails, not bloody likely.  When I went through chemo it was winter and so freakin cold so there was  just no way I would have stuck my fingers in ice.   However, although I didn't lose my nails they are a funny color and I have to keep polishing them as to me they look a bit of a dirty colour and I hate them.

To you ladies going through treatment keep drinking.  I wasn't much of a water drinker either but I learn't how to be one quickly as it helped so much.  I ate water melon until it was coming out of my ears and I was given EMEND for three days which I took religously because sickness was my biggest fear.  I was fine and only had to put up with the constipation which was a real shit (pardon the pun) and the aching and flu like symptoms over the third to fifth days. I still have a blocked nose, a  cough and not much taste but other than that I feel fine, at the moment. Still have those 'what if' days but they do seem to be getting a little less as I get further on from treatment.

Now the port.  I loved my port. Had no trouble until today.  I went for my monthly port flush and was telling my onco nurses that my surgeon had scheduled a date on the 29th January for its removal.  I also said that I wasn't too sure about having it out yet as I didn't want to temp fate.  Well the onco nurse was getting everything ready for me and then he started to inject the first lot in.  I started to get pain which just increased in intensity until it was really very sore.  He stopped injecting and the other onco nurse came over and they said oh christ its bulging.  Well  that freaked me right out. I thought this is it I'm on the way out and I have a funeral to go to in two hours which might turn out to be mine lol.  They said it might be a blood clot so they took me straight round to emergency and the docs there did some tests and said they didn't think it was a blood clot but that the port had given up as it only had a certain amount of life time. They said I would be ok (Hope they are right) and to get the port out at the end of January. So that was my decision made for me.  Can't wait for it to go now. When will these hiccups with everyone stop. We only just made the funeral by five minutes which was lucky.    

As for Kathy. Well done,  bout time you flitted back on here armed with excuses of course (only joking).  You left us without a word of warning so now we want regular updates even if it is only about your bloody cracked window screen. 

Time we had another post from Titan too. So show a leg or two girl. 

Bernie's now left us cause she said she can't keep up with everyone and I am missing Tazzy greatly.  We need some humour in our lives ladies so it's time we had a few laughs again.

Thinking of you all with all your side effects but us oldies on here (no offence ladies, only meant to the thread lol) can tell you that you will get through this.  Hard to imagine I know but you will come out the other side.  

Catch you all later. Big hugs. Annie  

  

Cocker_Spaniel

Loafer

Hello ladies ~



Agree with all comments regarding hydration. This is critical for your well being. I drink 5 water bottles during my chemo infusion alone. I did use cold cap treatment so I was there 8 hours. DH insists I will die from over hydration. Not likely!



With regards to weight, I gained 10 pounds during chemo treatment and I never took the steroids provided by pill. Just steroids during pre-chemo IV. Of course the stress of cancer caused me to lose 7 pounds initially, so I netted +3. I never had problems with nausea so eating has not been a problem.



For those who have had a lumpectomy, do you experience any lumping or cording near lymph nodes? My breast has all kinds of things going on which I'm not sure are all normal. I have strange lumps, indentions, cording, fluid, slight pain - ugh! My breast surgeon said I was good til May, should I mention to Onc? Finished last chemo on Friday so moving to Rads next month.



Good luck to you all!!