Calling all TNs
Comments
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catwhispurrer: The first year after tx I saw MO every 3 mo and BS and PS every 6 mo. MO does CA 27-29 each visit along with complete blood counts, chemistry panels and Liver enymes. I have had a few PET scans due to an unresolved axillary lymph node that has since disappeared. Now I am 3 years out and see MO every 6 mo with same blood tests, BS every 6 mo and PS once a year. No scans unless there are symptoms. Seems that each MO is different in what they do. My advise would be to speak up and get what YOU want. My MO aksed in April if I wanted a PET scan just to check things out, I declined because I am feeling good. She mentioned that we might get one when I see her in October......If I am still feeling good I might just decline that one too.
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CatW - so glad you escaped rads with your skin in good shape! When you have a complete metabolic blood panel test, it measures your blood calcium serum. If it is out of range, it is called hypercalcemia.
Heather - I so hope all works out with your insurance! Fingers crossed. -
I would like to propose a new group discussion - although it still is BC related. I suggest that we list one or two of the side effects we have encountered (whether common or unusual) and the particulars about how and when it occurred, how we dealt with it, tips we discovered, etc.
Hair loss - One of the most difficult SEs for chemo patients. Usually occurs 2 - 3 weeks after 1st chemo tx. Although I had prepared for this by buying a wig, hats and scarves, no-one is really ready for it. When mine started to come out at exactly 2 weeks post-tx, my DH said "Time to get it buzzed" and I said "No way, let's see how long it hangs around". On a Friday, I was in a store parking lot and it was very windy and the wind blew my hair against the way it normally lies - I started crying, it hurt so much. No one had ever mentioned the roots hurting when it fell out. I had it buzzed the next morning! Apparently it starts to re-grow 6 - 8 weeks after the last tx - something to look forward to.
Eyebrows / lashes - When my sister was going through chemo, she looked really good bald but it really threw me off when she lost her eyebrows and eyelashes - one uses them so much to express emotions, etc. I am not looking forward to this SE. But I was really surprised to find out that we lose them so late in the process - often at the same time our hair starts to re-grow (6 - 8 weeks after last tx)!
Doreen
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Wow, have been off the boards for a few days, celebrating Canada Day and a long weekend in Canada.
Just popping in to say:
Annie: glad you're back. I developed a rash during taxol on my arms; it went away, but you could ask your doc for a topical treatment.
Fern: Welcome, good luck with your onc appointment. Write down all your questions and take notes. It's amazing how you can forget stuff after the appointment (or at least I do!). I would be very surprised if, with TN and one involved node, they don't recommend chemo. Please come back and let us know how it goes.
Inmate: Yours was the biggest and best news I have heard in a while. I know all the struggles you've been through from all your earlier posts, and all I can say is, you are one super-strong woman, with awesome spirit. Congrats on the NED status.
Cheers, everyone. Enjoy your weekend. Stay cool.
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As far as SEs go, I had a rough time with fatigue. Could hardly get out of bed for 10 or so days after chemo. But I had read such could happen and wasn't surprised by it. What really hit me hard:
Constipation: Everything I read mentioned this briefly, but nothing, but nothing I tried worked. I even had to go to emergency room one Sunday. They took xrays and said to see doctor in the next morning! MO made light of it and prescribed something, still little relief until several days later when diarrhea set in. Over the course of 18 weeks of chemo, I learned to eat only fruit and vege's several days before and after. For me and chemo, this was the worst!
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Good Morning Ladies
Its a very frosty but sunny day here. So should be a nice day.
Heather - you just look so happy. Must have done you a power of good going home to see hubby and those boys. And so good to see a better picture of your face. The little ones they give us on here are not big enough to see someone properly. I do hope you get your insurance sorted cause it would be terrible if you had to go back to Florida when you are so happy where you are.
Tazzy - the side effects on taxotere on my computer seems to be similar to the ones on taxol but I will have to see what my oncologist says next week. I really hope I can just go straight to rads even though the side effects are tiredness. Glad you have a holiday in Canada. Will be nice for you to have your old fellar home for a few days.
Kayak2 - I have written down the names of those drugs and will take them with me when I go next week. Thanks so much for your help.
Catwhispurr -so sorry you are getting neuropathy too, its a pain in the bum isn't it. I cant even squeeze the tube of toothpaste or do up any buttons. We get rid of one problem only to get ten more. I thought mine was bad but it must be horrible for you not to be able to walk. I'll give you one hand and you give me one leg then at least we can hop along together lol.
Karen - geeze I hope your calcium has gone down then if thats what it means. This train never seems to stop somehow and I'm sure its picking up speed.
Kathrynn keep those clothes on!!!
Well ladies have a great day. Is everyone having a holiday as they don't seem to be on here lately. Come on girls back to the thread so we can see what you have been up to. Missing you all. I'm going back to typing now or at least trying to. Annie
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Here's something to start your week!!
Maria had just got married,
and being a traditional Italian,
she was still a virgin.
On her wedding night,
she stayed at her mother's house,
and was very nervous.
Her mother reassured her:
"Don't worry Maria, Tony's a good man.
Go upstairs and he'll take care of you.
Meanwhile, I'll be making pasta."
So, up she went.
When she got upstairs,
Tony took off his
shirt
and exposed
his hairy chest.
Maria ran downstairs to her
mother and says,
"Mama, Mama, Tony's got a big hairy chest."
"Don't worry, Maria," says the mother,
"All good men have hairy chests.
Go upstairs. He'll take good care of you."
So, up she went again.
When she got up in the bedroom,
Tony took off his pants exposing his hairy legs.
Again, Maria ran
downstairs to her mother,
"Mama, Mama, Tony took off his pants and
he's got hairy legs!"
"Don't worry! All good men have hairy legs.
Tony's a good man.
Go upstairs and he'll take good care of you."
So, up she went again.
When she got there,
Tony took off his socks and on his
left foot
he was missing three toes.
When Maria saw this, she ran downstairs.
"Mama, Mama, Tony's got a foot and a half!"
Her Mama said,
"Stay here and stir the pasta." -
LMAO - good one Cocker.. ha ha ha ha !!!
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Annie--Much of the eastern part of the USA is without power due to a huge storm. That might be why we aren't hearing from many of our friends.
I've been wondering what the temperature is in NZ when you say it's frosty outside. And hoping your hands and fingers are feeling better...much better. It must be miserable to try to type
We have our 4th of July, Independence Day, on Wednesday and a lot of people take the week off to go on vacation. We stay home and marvel at the amount of traffic that heads into Yosemite National Park. We try to buy enough groceries so we don't have to shop and fight the tourists. It's the price we pay to live in paradise. Jan
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SE's:
FATIGUE - oh the fatigue (and aches - I only count that as one cos my aches are worse when tired). With each chemo treatment I got more and more tired. And it wasn't the tiredness that is cured by a quick nap. They warned me about fatigue, but not like this. I would ge out of breath doing the most of simple tasks because of fatigue. I am 9 days PFC - yay and hope that my red blood cells will recover quickly. Cant wait when I feel 52 again and not 152.
BONE PAIN - I mean they told me after my neupgen shots it could hurt, even mentioned that some people needed to go to ER and get morphine, but OMG ! I never ever knew pain like this (cant you tell I never experienced childbirth
). Been reading on this board that people have been taking Claritin for this and it works... happy that they've found this is working.Doreen... wasn't the hair pain just horrible. I wasn't expecting that either.
for the fatigue I learnt not to make any unnecessary trips either up or downstairs. Sit down when getting dressed, make one side of the bed then walk round and make the other. Make sure that I rested before getting too worn out.
for the bone pain...more drugs.
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Kayak and Annie, I just re-read Kayak's post about Cymbalta and neuropathy. I have been on Cymbalta for depression for about 2 years, which was well before my BC diagnosis. I barely had any neuropathy, and didn't know I could have had some . But I remember the MO asking before each infusion if I had pain in my hands or feet. So there just might be something to that drug. My DH was prescribed it to help him sleep thru the pain of a severe shoulder injury. Jan
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Tazzy I only experienced really bad bone pain one time with my shots, come to find out I was dehydrated. The fluids I was drinking wasn't the right fluids. So make sure to drink plenty of water, aleve and claritin. Hope you feel bette soon!
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Inmate...I am soo very excited for you...this is the best news! I know that you are cautiously optimistic but that's ok....that's a good thing.
My onc told me (and other patients that I know) that I "sailed" through chemo..not sure about that but to be honest with you I never really had any major issues...it certainly was NOT FUN but I survived it......I wonder sometimes why some of us have more se's than other's...do we get different drugs to combat the nausea? Do some of us not get the right amount? My friend who just had her first chemo only had emend through IV......I just don't understand why she was only given it once......I hated it that she had to suffer like that when she shouldn't have had too...
Hope everyone has a great week...Happy Canada Day...and July 4th too! We went to the casino on Friday......b-day party for my niece on Sat and shower for another niece on Sunday...I'm tired!
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Jan69 - I'm 12 days post tx (my 4th and last) and I'm just getting over the fatigue and starting to be able to function at all. I found that also contributed to quite a bit of depression due to frustration over not being able to get anything done and needing to have a rest after just moving from one room to another.
Is neupgen the same as neulasta? What were you taking for the pain if not Claritin? I just took Tylenol as I had been directed by the doctor but, although I did have pain, I don't think it was anywhere near as bad as yours.
Hopefully you were not affected by that flooding out there in BC.
Doreen
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Sorry, meant Tazzy not Jan69.
Doreen
** invoking chemo brain excuse **
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Hello all- looking at the weeks weather - HOT, HOT, HOT. I live in the midwest and at least got some rain last night.
My town has been celebrating its bicentennial- 200 years. We've had food, food, parades, fireworks, music, kids games and many other things. Its been a nice time bit a lot of late nights and the heat has been miserable.
I have been lurking around and reading what all of you have been up to. I guess my contribution to the side effect info would be :
NAUSEA!!!!- From the moment I got in the car to go home after my first Adry. I suffered from nausea. It lasted the entire 2 months until I started my Parataxol. My first 2 doses were the worst. I couldn't eat or drink anything. I lost about 10 pounds (started at 115 pounds) I even slept in the bathroom the first few days after treatment. Had to get fluids after each treatment and had losts of trouble with my counts. Somehow I never had any trouble with the Neulasta shot though. For the last two Adry. I was given a patch (think it was Sancuso-not sure) but it as made my life bearable. At the time I didn't know if I could make it --but I did.
Insomnia- While on Parataxol I suffered an allergic reaction to the premed- Benedryl. Was so sick!! My ONC took me off it and I did great- other than not sleeping for the 36 hours following treatment. I roamed the house for hours while everyone else slept.
Not sure I brought anything anyone wanted to know to the discussion but if anyone can understand how it was it is you ladies- thanks for listening. At least I have been done since Sept. 2010
wishing you all well, Kelly
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Doreen--Come to think of it, I didn't have any pain with Neulasta either. Could that be from the Cymbalta too? I guess I dodged a few bullets, but I had a horrid case of fatigue and a general "whole-body-feels-awful." And then on to the rads. My skin turned a burned dark brown and ripped in places. I had to stop for a week near the end. Bad memories and I can feel for everyone going thru this now or looking forward to this chapter. But it does end and life resumes with a new normal. So glad we have treatments that work as we wait for a magic pink pill. Jan
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Kellcbk- I am in the midwest too about 40 miles south of Kansas City, Missouri. A storm swept through KC and the northern suburbs last night, but we didn't get a drop! We have not had any rain for almost 3 weeks now. We went to a fireworks show last night and 2 fires started in the grass- thankfully the fire dep't. was right there and put them out immediately! This is getting ridiculous!!
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Hi Doreen, Think Neupogen and Nuelsta are very similar - both to produce red blood cells. My DH administered my shots for 3 days after chemo. My MO told me that my red blood cell count really dropped - mine dropped to 105. So 150 is normal, 120 low. She said that is why. It can only improve now I dont have to go back to the BGC. I didn't get depressed about not being able to do stuff, but sure did get frustrated by it. I know it will improve, but I am not by nature a very patient person. My MO prescribed t3's for me. I haven't been affected by the flooding here in BC - thanks for asking.
ksmatthews. I know that I am not dehydrated, but that would make sense. I most probably drink double to the recommended daily amount.
Still I think I have been pretty fortunate with the SE's I did get. Reading what some people have to suffer I am not sure I could've made it. Especially reading yours kelly, with the nausea. Agree Titan, funny how we can have the same drug as another person and have totally different SE's.
What helped me get through what everytime I felt so low and hurt I would think it must be kicking the crap out of the cancer.
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I didn't have any major issues with chemo, either. But I was a walking chemical waste dump. I didn't let any SE get out of control before I took something to counteract it. I had some heartburn with AC so I took Prilosec and that took care of it. Then when I started Taxol, I added Pepcid. Each chemo aggravates different acid pumpers, so that's why you might need two different kinds to keep reflux at bay.
To prevent nausea, I drank 96 ounces of fluid every day starting the day before treatment, I had IV aloxi, a dose of Emend, 6 mg of Decadron and I wore an anti-nausea patch (Scopolamine). I took Emend for the next two days. I had treatment on Wednesdays and by Friday night I was able to go out to dinner. I didn't always eat much, but I wasn't nauseous.
I hate to hear of people suffering badly with chemo. It's no walk in the park, but there are so many drugs that can make it more tolerable.
CS - you ALWAYS make me smile!
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Minxie....have you had Haleven yet? It is supposed to be a great "clean up" drug for TNs and it seems to have worked for me.
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Good Evening Ladies
Jan69 - our temperature this morning was minus 4 with a thick frost. Nowhere near as cold as some countries but I really feel the cold. When people from England come over for their holidays they say our winter is like their summer brrrrr and they walk around in T shirts. We have the same here at Christmas, Easter and any holiday really where people flock to Taupo and the roads in and out are so congested. They wander all over the pavements while the workers are trying to get about and we can't get a table very easily for lunches cause they sit there so long. We call them grockles here, nicely of course, but they do bring plenty of money into Taupo, this is pronounced (toe pore).
Dormac, Kellycbk, Jan69, Tazzy, LuvRVing - my contribution on the chemo side effects would be feeleing sqeamish, I too had Jans whole body aching and feeling awful and so heavy with tiredness, mouth sores, thrush down south, chronic constipation, weepiness, depression and no taste. They gave me Emend the first morning and then each day for the three days after plus two other antinausea drugs. I didn't feel like being sick just felt a bit sqeamish. The good thing about it compared to taxol is that after the 3-4 days of having those side effects they went and I felt great for two weeks until the next treatment but with taxol although I feel tired which seems to be all the time, my neuropathy has not gone at all and is affecting my home life and working life big time. Plus I have had chronic thrush both ends and a horrible itchy rash on my hands and arms which drive me crazy as soon as I get into my warm bed, plus heartburn. So what would I prefer, the AC chemo I think, because I would know I was going to feel better after day 4 although I only just made it through thanks to the girls on here encouraging me because I didn't think I would make it through to the last one and it was only four, whereas taxol if I had made it/or make it, it will be 12 ugh. Personally I think all of it is horrible and a real trial for us but when I think back to when they didn't have those nausea/sickness meds those poor people must have really suffered. Most of the ladies on here had some, if not all the side effects that I had so they understood what I was going through and was marvellous especially as most of you know how I have that phobia about sickness. I truly would not have made it through any of this without these wonderful ladies. If I had just vomited once I would have said no more chemo. I had a great appetite through the AC chemo but it seems to have left me on taxol.
Tifj - maybe I won't long for your lovely hot weather any more then cause even I would be wishing for rain. I went into another site on here and a lady was saying that they are having fires because of the hot weather and she was having to evacuate her home. So horrible for her.
Jazn69 what do you mean your skin was ripped. I'm for rads soon, can I prevent that happening.
My radiation oncologist said I must not lose weight when I go for rads cause it alters the machine they will be using. But if my old fellar does the cafe he won't be able to be there with me cause you have to stay in their lodge from Monday to Friday and its a long way from here. I haven't been away from him for 45 years and I lose weight easily plus it won't be him cooking the things he knows I like. A big baby I know but I will miss him so much and I know I will lose weight. Oh well spose I'll have to let him be happy for five weeks without me lol. Mind you the poor sod probably needs a break from me anyway lol.
It looks like he will be taking over the cafe next weekend but it will need to be thoroughly cleaned before any equipment goes in so I will have to get my hands moving for that. Its to be called "Al's Tarmac Cafe". He is so proud of it. My son-in-lw runs all the airport for his business as well so at least he will have someone to talk to. Annie
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Remember that time not so long ago when I said I wanted to do something outrageous and run down the lake front naked and get a rose tattoo on each buttock - well I have changed my mind......
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Morning ladies.
I was told I sailed thru chemo too because of my age (42). I took my meds as prescibed down to the minute. Even set an alarm to get up in the middle of the night. I was so terrified of bone pain and nausea. Thankfully, while I felt terrible I didn't get either too bad. By the end of treatment though I was starting to get mouth sores and the WORST taste in my mouth. I know that doesn't seem like a big SE but it was terrible. Nothing I could do helped either. Water made it worse, I could eat but that only helped until I swallowed. It was so bad it used to wake me up at night. According to my hubby Chemo Brain was pretty bad for me too. We've actually fought over things because I just couldn't remember anything.
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Chemo SE for me was the constipation, heartburn and the insomnia. Luckily there are many meds to pick from to help fix these problems. Medicine cabinet was full of a little of everything. I felt like I owned half the pharmacy myself!
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Hey Cocker.... I am originally from England and agree.... -4 quite balmy weather - ha ha!! Yeah, England doesn't have seasons, just a grey drizzle with a few days of liquid sunshine thrown in. Oh! cocker I can hear in your post how much you are going to miss your old feller. We have a similar Lodge here for people that need to travel - I am lucky I live only 20 minutes from the Cancer Centre.
And as for the SE's - they all pass, eventually. Maybe chemo brain sticks around for years afterwards. Well I am going to say it does anyway
Ha ha ha... on the tattoo joke.
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Just had to post this picture from our one day in London...do pay attention to the sky! And I did nothing to enhance the color of the BLUE sky!!! I guess we were extremely lucky!
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Great picture Luv. Yes, us Brits always make out our weather is way worse than it actually is. We just remember the grey days. Although saying that, you were lucky to have such a beautiful day. They are scattered throughout the year.
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Annie, Radiation dried my skin so much that it lost its elasticity. During radiation sessions I had to have my hands over my head while flat on the table. That stretching caused the skin to tear. I used every ointment, cream, solutions to try to keep the skin healthy. Not sure if any helped, as my skin was so fried. From what the nurses said, I had an extreme case of skin reaction, so you probably won't be so affected. Also, I had a modified radical mastectomy,that might make a difference from someone with a lumpectomy. One problem with the creams if that they all have to be washed off before each treatment. I'm sure your RO will tell what to use on your skin. I feel for you that you must stay at the lodge during treatment. I was in and out of the facility in less than an hour. That leaves a lot of free time until the next treatment. Can you take your typing with you? Sorry my post is so grim. And especially hope your hands a feeling better so you can work today. Jan
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And speaking of English weather.... July 2nd and Wimbledon Tennis has been rained off.
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