Calling all TNs
Comments
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Thanks Kathymn - awaiting the scheduling of Oncologist #2 . . .
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Thanks Melissa119. The sentinel node (only one taken during surgery) showed NO cancer at surgery time, but came up with 0.83 mm AFTER surgery in the pathology . . . I was (probably wrongly) SO sure it was ALL gone . . . now, want mostly to know the %'s on rate of recurrence, especially with the triple negative factor. I also have a heart condition that will define the types of chemotherapy that will work and NOT destroy my heart muscle at the same time. . . . TOO many things to think about and I really spent the first 5 weeks post-surgery thinking I had this thing beat already.
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Thanks LuvRVing: scary, way scary . . I am so sorry for you . . and thanks for the information. SO true, stats do NOT qualify as the only predictor. Point well taken . . . I just SO didn't want to do this . . . (I'm whining for a moment.) OK - done whining . . . I await the Oncologist' appt.
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FernMF - I know you said you are waiting for the 2nd oncologist appointment but, in the meantime, I'd like to share my opinion with you, mainly because we were in similar situations. I'd like to PM you, if I may. Please let me know.
Doreen
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Good morning ladies. Hoope you slept or sleep well.
I was up in the night with this terrible rash on my hands. The itch nearly drives me crazy and no creams seem to work. The skin on my hands now feel like leather and it used to be very soft so I can't understand what is causing the rash. Although I had it when I was having taxol I haven't had any taxol for a week now.
Tifj - I like the idea of using chemo brain forever. We could get away with murder!! couldn't we. Just blame it on chemo brain.
Jan69 - I know where you are coming from. I wonder too what the chemo has done/is doing to my body after all it is poison even my BS said that. Is it helping/has it helped. What are my chances now. Will this come back and when ... These thoughts never really leave me and when I see my oncologist I wonder what she is going to tell me. Nerve racking to say the least. Something tells me it won't be too long before I have a recurrence, maybe its because I am 3a, stage 3. But very frightening.
Glad your drain is out, more comfortable for you and hopefully your seroma will clear up soon.
Kathrynn - it would not let me into that site at all. Just told me how to photobucket my photos but I couldn't get in to see anyone elses.
Heather - so glad you had a good weekend with hubby and your babies. Can just picture you singing away and Harley sitting patiently waiting for the cake. "What the heck are they making that noise for, just gimme the cake". When my daughter was younger and not married she had a little bichon friese called muffin, and on muffin's birthday we all had to sing and then she got an icecream all to herself.
Know where you are coming from with the vaccuuming. I remember one day being techy with the old feller because he had missed so much. He looked at me so sadly and said "I am doing my best". I looked at him and thought he is, he is doing his best. Most men just don't so see things or fluff the way we do. I don't stop until everything is done properly they just skip round it. And yet I don't think I could live with a houseproud husband where everything has to be perfect. But I wouldn't change a hair on his head. Well maybe, its white and he hasn't got too much left lol. Hopefully your dear fellar will be with you soon
LMBCA - I am so sorry your mum is having all these problems. It's crap all right. She must be so tired of it and so worried the poor lady. Hopefully things will come right for her after she gets that port out. Somebody once said "cancer, the gift that keeps on giving" and they were so right. Cancer Sux.
Well I am off to get ready for Andre's concert. Should be really good.
Have a good weekend with no worries, no SE's and lots of happy smiles. Annie
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For all those sweltering gals out there!! Hope you get some rain soon, in fact I'll send you mine.
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I feel so far behind, that I'll never catch up! Welcome to the newbies, I see your questions have been answered.
Annie - maybe I can get a work visa and go to work with your husband. It sounds right up my alley! At 50 - it would be a brave undertaking, kudos to him for following his dreams. I am a very social person, being able to cook and be a part of the world, would feed my soul. I hope he feels the same. My aunt, a wonderful typist, said send her your work, she's retired and could do with a project! I so hope your hands, return to your new normal soon. In my experience, taxane neuropathy peaks at there months from when it shows up and is horrible, then slides back to normal. By the way, what do you type?
I've been away for the past few days, helping a friend who needed a few days company, saw my autistic brother, took him to see our aunt, visited my girlfriend in the nursing home, sprung her for lunch and a major restocking of snacks and such. So now I am home, enjoying being waited on hand and foot by my DH.
I think I'm caught up on my karma!
My calcium is trending up - having it re-checked Monday. I so hope it goes down! I am too busy in July, to deal with it. Kids to take to camp, oldest kids girlfriend visiting and helping a friend on VA , who's retarded son needs back surgery.
Life is good! For once, it's not all about me! Hang in there dear ones, life does become normal again!
Best wishes to those in treatment, or pondering treatment. Hugs!0 -
Kathryn,
You will still have to change clothes so they can see your marks, but you might think about a tshirt 2-3sizes too big, cut it open down the front, and add ribbon ties to close it at critical areas. If ya know what I mean. I would only 1 or 2 because you will only wear them 10 - 15 minutes a day,with weekends off for like 28 - 30 days. Do not spend big money on this project!
beccad0 -
Karen - so very glad you are back. Just hate it when you are away and don't come on here. Yep that would be fine the old fellar would hire you like a shot. Yes he is very passionate about cooking but I'm sure as a chef you would be wonderful. I just hope it won't be too much for him as I couldn't live without seeing that wonderful face every day. We have 12 doctors at our medical centre. I supervise the Admin staff. All the doctors dictate all their patients consults so we have to type all them. Plus I do specialist letters for them and their own private mail. All the docs see about 60 patients in a day so that is a lot of typing for us and most of them are long consult notes. Plus I have to deal with every other query that comes in from outside docs, specialist, hospitals etc. It is a very busy position and the girl I left in charge while I worked from home is finding it very stressful so I have been doing almost as much from home as I do at work to take the stress from her. So your friend who can type would be a god send to me. Send her over I'll pay her fare. I didn't know you had an autistic brother. The lad at work who does the scanning for me, Phillip, is autistic. He is good at his job (I trained him well) I just have to keep an eye on him quite a lot because he goes to read the paper as soon as he starts work for ages, makes endless coffee's during the day, chats for ages to everyone in sight and generally tries to change systems around without asking me and of course then he gets muddled but I love him to bits.
Whats does that mean in relation to BC that your calcium is up. You have had a very productive but busy few days away so its nice that you are being waited on by your old fellar. Just don't go away too often. I'm scared now my oncologist will put me on taxotere and I will have some new side effects to deal with. I'm just getting so weary of it now all of a sudden, it just seems endless and my hands hurt so much when I type but can't moan too much, doesn't do any good does it. So happy that life is good for you, you deserve it so much. Have you read Inmates post she is doing really well too.
Kathrynn - what is all this about you having to change clothes. You just keep them on. I know that chap only lives a few steps from you but its too soon!!!
Andre's concert was really good. His music brings tears to my eyes.
Have a good evening ladies. It's 10.30pm here and I'm off to do some more typing. Excuse ny mistkes on here won't you. Annie
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Morning ladies.
Have had a wonderful weekend with my boys. Managed to get the house cleaned up and one of our trees cut down. Got some pool time in too. We had
our little birthday party for Harley. 
Tired to post pics but I stink at it so I hope this turns our.
Annie - Please don't think like that. You have gone thru so much to wait for the shoe to drop. I really admire your old fellar - Hubbies a baker and his best friend is a chef and both would like to open up a small sandwhich / dessert type place but are too nervous to try. I think it's fantastic that he is going for his dream. Best of luck to both of you! Hubby is worried sick now after speaking to MO about insurance so tomorrow morning I need to pull my boss aside and tell him that I had BC and need to know for sure that I will be covered. If not, it's back to Florida for me. And I just don't want to do it. It breaks my heart to think I'd have to come back. I just want my boys up there we me and keep florida as a place to vacation.
Hope everyone has a great day. And no SE's!
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I'm with OBXK - so far behind I'll never catch up.
Just want to say Annie it think it is wonderful that your old fellar is going to live his dream and as my Mum always says to me "the only failure in life is not trying". So good for both of you. I wish you every success and happiness in this new venture. I really hope you can get something for the neuropathy and now the rash ?! Poor thing sounds awful.
Mccrimmon - great news on the 3 month check up and great pictures of the birthday party. Happy
you are all together again.I am trying to find out what is the difference between taxol and taxotere - I had 4 treatments at 3 weekly intervals of taxotere - the SE's really don't seem as extreme as you poor girls on taxol.
Oh! and great.... More fatigue on rads - cant wait for that one.
To all of you suffering on chemo, with SE's and just generally having issues. Really hope you can find some comfort and answers to all your troubles.
We are enjoying a long weekend here in Canada - Happy Birthday Canada - so DH is home for 3 days. We managed to spend time in the garden yesterday (inbetween rainy showers) and just hanging out with each other. Just wish our weather would be a bit more like summer.
Peace & hugs to everyone xxxxx
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Annie (CS), I saw an abstract that was presented at the recent annual meeting for oncologists (ASCO), which gave the results of 3 trials indicating that Duloxetine (Cymbalta) was shown to reduce pain in chemotherapy-induced peripheral neuropathy. Maybe your doctor would prescribe it for you. It is an anti-depressant, but this class of drugs has been used to help pts with diabetic neuropathy, and now clinical trials have found it to be effective in neuropathy caused by chemo. Venlafaxine (Effexor) is another drug in the same class which has shown efficacy for this too. Hope you get some relief soon.
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Inmate - Great news!
Annie - elevated calcium, can mean you have a problem with your papathyroid glands, bone mets, or multiple myeloma. Because of my BC history and my mom's M/M history, I am at greater risk for the later two. However I feel like it will have gone down, when I retest. I'll make sure I am very hydrated. If it is higher, that means test to find out why. That's just a merry go round, I have no interest in hopping on.
I think I'll be a slug today!
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Hi Gals - I am officially finished with treatments. I had my last rad on Thursday. Yea! The girls let me ring a big bell, gave me a card and balloons. I had made them some oatmeal/blueberry muffins. For those going to start rads, after trying their large, thin hospital gown, I just asked the rad tech's if I could wear a flannel shirt and they said yes. So, that is what I used for the rest of my rads and it worked out well. It kept me warm along with the blanket they put over me because I am always cold and the room was freezing, especially laying there half exposed. My skin is pink but holding up pretty well. I just used pure aloe vera jelly made by L'Bri.
I meet with my BS on Monday to talk about taking out my port and follow-up screenings. I feel I should get 2 different screenings every 6 months, like a mammo and MRI for at least the first 3-5 years. I have a family history, dense breasts and the tumor was deep against my chest wall (hard to see with a mammo), besides being TN. For those who are done with treatments, what screenings do you get? My MO did a CA 27-29 test (?) two weeks ago and I never heard results. This is the first time I had one of those. I don't even know what it means.
Karen - what does high calcium mean?
Heather - I sure hope you don't have to worry about insurance. That sux! Glad your 3-month follow-up was good. What are the "markers?" Love the doggy pictures.
Jan - it sounds like you have had a lot of screenings. I am still shaky because I have not had any screenings since this whole BC started last September. It took them 3 months before I had surgery due to various delays in screenings and I am so afraid it spread during that time. I have been given the "all clean" by my MO just from a feel-up, but no screenings in 9 months! I sure wish they could tell me I was NED. I agree with you though, it is a lot of radiation for a body, at what cost? In addition, I had a lung collapse from the port insertion, so I had lots of chest x-rays too which I know are bad.
Inmate - so happy to hear of your NED! Congrats :-) That is the best news I have heard. Happy dancing for you.
Annie - I have bad neuropathy too, except mostly in my feet and I am 2 months out from taxol. My fingers have some, feel swollen and fat, but still function. I keep hearing it will get better but so far, NOT. It hurts to be on my feet, try to do my walks and I almost fall over when I get out of bed. Well, I guess I am moaning along with you. We can commiserate together!
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Congrats on being done Tina! The CA 27-29 test is the tumor marker test. The MO watches this and if there is a large spike in the number it could signal a recurrence. Most MOs don't have a lot of confidence in this test, it can be inaacurate for some yet highly accurate for others (LuvRVing). The only screening I get done is a 6 month mammo on the remaining breast, but that will go to yearly in Sep't, my 2 year surgery anniversary. I am not offered any other tests unless new syptoms warrant it.
Oh, someone please correct me if I am wrong. I think an acceptable CA number is anything under 35?
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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.0 -
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."0 -
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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