Calling all TNs
Comments
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I've been gone for a while but....March 28th will be my 5 year Cancerversary from my TN diagnosis!!!! Just had to share!
Linda
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Congrats to Linda and Linda on significant milestones,
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Linda Congrats on this milestone cancerversary. What tx did you have? Lump,Mx,Rads,Chemo? My dx same as yours 3/11. I had lumpectomy and rads...and terrified of reccurence. 5 years is such an important milestone. Any suggestions on lifestyle to get so far?
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Heidi - Loved the pics!!
Titan, you can google Scream Cream, I think its a prescription you get from your doctor. I'm sure this is all TMI but you have tried just regular lubrication? The kind you can get in the stores?
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Hey Suze- Welcome back! Hope you had a great Disney cruise with your family.Can't wait to hear the details
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Titan, there is at least one very active and enthusiastic thread on here about scream cream... you may want to search the boards. A lot of women seem to find it far better than the usual lubricants etc.
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Ugh...I can't even think about sex while going thru chemo....my poor DH.
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What's sex?
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and Linda..happy birthday too!
Heidi..google sex and maybe you will find out...ha ha...you certainly won't see me on that website..lol.
Char..I don't know if sex and chemo mix real well...maybe for some...didn't work for me..poor dh was ok...he had other things like making sure I was just basically getting through treatments and following me around to make sure I didn't burn the house down or something...I mean we ARE on strong drugs...it's not like we are normal during chemo treatments for gosh sakes..I think I was way out there somewhere....but my friends didn't know the difference...lol.
I'm embarrassed to ask my onc for scream cream..I can just imagine his face now...Scream Cream..what exactly is this for....me..well onc..I kinda need to have..you know...sex...and then he would get all somber like and say...ok....it's like almost asking your parents about sex..I think I will buy some edible cocoa butter....that is on the scream cream thread also.
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And yes to you Smithle! good stuff..very happy for you...we really appreciate you sharing this with us!
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Edible cocoa butter? Holy sh*t!
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Titan- I have run through that conversation with my gyno in my mind. I am embarrassed just thinking about it! I can't imagine actually discussing it with him! Maybe I'll join the edible cocoa butter group. Where do you get it?
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Heidi:
I think Titan's getting really desperate if she wants to eat her cocoa butter and have sex all at the same time. Maybe we should re-title her name to "Scream Machine." Her poor husband, think we ought to warn him???? Lol!
Thanks for the birthday wishes, Titan - God, Never thought I'd be so very happy to be getting REALLY old!!!!
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Linda - congrats on the birthday, i consider that a great milestone. YAYYY!
Having trouble sleeping tonight, lots of fluid on the lugs. Ill be back to fill in more tomorrow about my trip after I get this stuff drained.
Have a great late night everyone!0 -
Suze-hope you had a great trip, sorry you are having to deal with fluid now, hope you have sweet dreams!
Titan, I am usually pretty shy about things but for some reason I think I could ask my mo for scream cream! He is kinda old and I think he has heard just about everything imagineable! The time I said f**** he laughed and said it back to me! We both laughed hysterically! I don't think I can shock him but he certainly has shocked me with some of the things he says! (I'm staying away from the edible cocoa butter!)
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I started a post and then pressed a key and then it went so if I post two please forgive.
Well Tuesday came around as I knew it would of course. When I got to the hospital I went first to have an echocardiogram and luckily that was ok or they said I could not have the chemo. So one positive. I had a melt down when I got to the Day Unit but everyone was just so so so kind. I had an hours education course on everything they would do today and that was great then the big guns came and that was it. They couldn't find a vein at first but eventually did. They said I might need to have a port !!!! not sure what happens here. Never heard of it. Anyway the chemo went well except I had red urine but they said this would happen and it did. They gave me Emend and Ondansetron and I didn't feel sick at all. I managed to get home with no probs and only felt like scrambled egg for tea as I didn't want to overdo it. Since tea I have had a funny pain not in the tummy a bit below that so I am not sure what that is and a slight headache but the headache could have been the stress of the day. They told me to take the antiemetics religously and at the right time. They made me promise !! I didn't need to promise I will take them as soon as .
Your posts tonight made me laugh about the scream cream (never heard of it) and the sex posts. Don't suppose it could be KY Jelly??.
Tomorrow apparently is the big day. So I am not in any hurry to go to bed as it will get here quicker. But day 1 is over and was positive thanks to you guys and the care I received. My next chemo in three weeks is in my home town and only five mins away so that will be better because I won'y have to worry about a journey afterwards.
Can any of you tell me if you have wigs. Are they worth buying, do you use it much, are they a good match to your own hair, do they itch, do they come off easily when out in the wind or do you just use bandanas.
Your posts have been a godsend to me and I am grateful to each and every one of you so thank you all so much. The journey has started and I cannot get off the roundabout because I have a wonderful husband and daughters and this is for them even more than me. So onwards and upwards, too late now anyway.
In reply to Titan's Sign Up I will put my diagnosis as best I can.
I am 65 years of age. Married with two wonderful girls and two granddaughters and two grandson's.
HX: dianosed by mammogram in October 2011, The cancer was so small that they gave me a magnifying glass to see it so it was a big shock to find it was high grade and aggressive and was Triple Negative. Underwent left Mastectomy with an excellent clearance but it was in four of the five nodes so the surgeon took them all out. It was also growing outside of one of the nodes which I find really scary, as has it gone further already?. I am having 4x3 of Cyclophosphsamide every three weeks, 4xDoxorubicin every three weeks and then 12x Paclitaxel weekly. I think this one is your Taxol. Our drugs here may have a different name but they can be found on Internet. I have Coloxyl and Senna for constipation but seems to be nothing for the diarrhoea if I get it.
I was interested to find that all of you on the forum only had a lumpectomy and mostly not a mastectomy. Is that something they do more of in the USA?
Well I am sure you have had enough of me for one night so sleep well guys. I will eventually go to bed but not looking forward to tomorrow.
Thank you once again for all of your help and advice it is invaluable.
Annie
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CS-I highly recommend a port, make the whole chemo, finding a vein so much easier! I have done it bothe ways, and am a big fan of a port. I did wear a wig when I worked. I am very sensitive and the wigs were itchy, yanked it off the minute I got home. I had a lumpectomy 10 years ago and when I got a new primary last March I had a bmx, shoulda done that in the first place as I am brca pos. Glad you got your first treatment out of the way!
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Hi to everyone, haven't been on in a while but been thinking of you all. Had my Ist year anniversary mammogram yesterday. Just have to wait for the results.
The scream cream comments make me laugh - so here's one for Valentines Day:
A Mother had 3 virgin daughters.
They were all getting married within a short time period.
Because Mum was a bit worried about how their sex life would get started, she made them all promise to send a postcard from the honeymoon with a few words on how marital sex felt.
The first girl sent a card from Hawaii two days after the wedding. The card said nothing but: 'Nescafe'
Mum was puzzled at first, but then went to her kitchen and got out the Nescafe jar.
It said: 'Good till the last drop'.
Mum blushed, but was pleased for her daughter.
The second girl sent the card from Vermont a week after the wedding, the card read: 'Rothmans'
Mum now knew to go straight to her husband's cigarettes and she read from the pack: 'Extra Long. King Size'
She was again slightly embarrassed but still happy for her daughter.
The third girl left for her honeymoon in Auckland, New Zealand.
Mum waited for a week, nothing. Another week went by and still nothing...
Then after a whole month, a card finally arrived.
Written on it with shaky handwriting were the words 'Air New Zealand'
Mum took out her latest YOU magazine, flipped through the pages fearing the worst, finally found the ad for Air NZ.
The ad said: 'Ten times a day, seven days a week, both ways.'
Mum fainted!
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Good one Bernie made me LOL....
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Bernie, Funny!
Happy Birthday Linda,
Happy Cancerversary other Linda
Titan, at this point in the relationship with my onc I'll ask/say just about anything. He's seen me at my worse, I figure I can't embarass myself anymore. Besides, it took hubby a long time to ask his doctor about a certain prescription because he was too embarrassed, I wouldn't want to waste anymore time. I'm trying to stick with my new motto "Just do it" ( I guess that is really Nike's but I'm using it now) besides I'm sure you won't be the first or the last to ask.
Welcome home Suze, I hope your trip was fabulous and your starting to feel better.
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Just saw this for you Titan.Beats the hell out of asking your onc for it
.... Have a good day everyone.
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Happy Cancerversary to Linda and Linda! I love hearing things like this...it gives me hope!
Scream cream...interesting:) I don't have a "significant other" right now, but will keep it in mind. Just in case I ever have sex again....lol.
Cocker Spaniel/Annie - I'm so happy your first chemo went well. You can get through this, and you will!
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Hi All,
Happy Valentines Day to everyone.....Suze hope you had a great trip....
Been busy....
Susan
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Annie, I hope you have a good night's rest, and awake with manageable side effects! I had a lumpectomy with my first cancer, mastectomy with second. I echo Bak on the hindsight and port. The port, is put into a vein in your chest, and sits right under the skin. Makes infusion access much easier. If you google "power port" it may help you understand. My first time with chemo, I wore a soft hat designed for chemo heads, when I was out. The second time, I just went bald! I wore my wig for about 3 hours, hated it.
Rest well, and keep us posted. Karen0 -
Thank you, Suze, and, while I welcome you back from your trip, I am sosorry to hear about the fluid situation. I am so sorry you have to deal with this. Please know that many, many prayers and nothing but good thoughts are sent your way constantly.
Love,
L.
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Thank you all so very much for the birthday wishes.
My wish right back to each of you is that I hope you also get to celebrate birthday #65 - and decades and decades more beyond that one too.
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Hope you had a great birthday Linda!!
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yLarajane: lost message -stage IV in bones-, going to hospice-no chemo, so surgery, had radiation-not sure if covered by Medicaid-baf lympedema, IV in crook not cureif Doxi will contrrol pain-received computer yesterday-hanging in in minute by by mintute,
Thank you all for geat support and help!!!!!
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Oh MBJ- I am so glad to see you posting- so sorry you are dealing with the beast again. My heart hurts for you and wish I could somehow ease your pain. I hope you are at least home now. Please don't give up- we need you here!
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Mary..WTF...going to hospice? There is nothing? I'm sorry..maybe I shouldn't post this..but is there nothing that can be done?...I'm sorry..crying here....
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