Calling all TNs
Comments
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Thanks ya'll!
Suze, rest up and I hope you feel better soon. Not fair that you should be hit by a flu bug.
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Mity,
I am so glad that your scan turned up benign!
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Char - I did the same protocol between June and September. I'm 61 and got through it really well (better than I'm doing with rads, to be honest). You can do it!
Yay Mity! You're right, it's funny that osteoarthritis sounds so good to us!
Suze - hope you are on the mend soon!
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Char...I had exactly that same treatment (49 at diagnosis)...4 AC 4 Taxol, dose dense...except that I didn't have a port......and guess what..I'm still here...no se's at all..you can do this.
Oh yes MIty....happy to hear it was arthritis!
One year ago I had a creaky type neck..whenever I moved my neck it felt like gravel or something...plus shoulder pain..guess what..I'm having it again..exactly at the same time as one year ago....My onc said it was arthritis..it must be the weather... ah well..I see the onc again in a few weeks and if it persists I will talk to him again...
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Mity - good to hear!
Thank you all for the encouraging words about my treatment plan! Titan, LuvRVing, Mitymuffin, KSteve -- I'm glad to hear there were those of you that could work through it. I'm the major bread-winner (DH works but makes 1/2 what I do), so I need to work for the financial reasons (I've got an 11 and 14 yo boys that eat me out of house and home!!)
Thanks everyone!!
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Good morning ladies.
Kymn- welcome back. I'm glad you made it through the holidays and YES! It's a new year and a new you.
Patti- just reading your post made me day. Thank you for sharing your 10 years with us. Sounds rough but your here. Absolutely put a smile on my face.
Inmate- I'm celebrating January 12 with you. Let it be the miracle we all hope for you.
Bac- hope your feeling better
Suze- I hope there is someone there to help take care of you while you're getting over your bug. I'm sending you some homemade cyber chicken noodle soup and hot tea.
Lush- you're always full of such kind words , thank you.
Welcome to the new ladies.
I made it through my first round of Cetuximab and Cisplatin. My daughter and son went with me. It was so scary. I had two nurses at all times. They had me so doped up for the cetuximab I could not talk just garbled words and so sleepy I could only open my eyes ocassionly but when I did I'd look up and see my daughter looking lovingly at me with this sweet smile. she watched over me the whole time. My son was with me right next to me holding my hand. From start to finish infusions started at 11am and we left at 8:00pm. After today the danger period will be over until next Tuesday.
Then I do it again. I'm praying this works. I met with my onc before hand she ran all of the tests on my heart and blood work prior. Tumor markers doubled in the last month in a half. My acupuncturist fired me. FOR REAL! She told me that if I did this chemo combo I had a 100 percent chance of dying and if I stuck with my herbs and acupuncture I had a 50/50 chance. I explained that with my macrobiotic diet changes for the last two months, meditations, herbs and acupuncture my cancer was spreading so fast I had no other choice. I'm hoping my body is strong enough to get through this and it works. I'm looking forward to getting my hands back in the dirt this spring. I hope you all have a good day.0 -
I'm typing this from my iPad and it often changes my words. My iPad keeps insisting that Luah.... Is now Lush.LOL any other spelling errors I will blame on this iPad also. Ha ha!
Almost forgot Mity.- so beyond happy your scans are clean. Sorry you are having so much pain though.0 -
Laurajane- I hope this is your wonder cocktail! How wonderful to have your kids right there beside you during infusion! You have a good day too!!
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LauraJane - Hoping this cocktail destroys your F'ing BC!!
- and how dare your accupunturist say that you! She should still be helping with the side effects.
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Yup, shame on that accupuncturist,LJ - no one knows your odds for certain, and I for one envision you out in the garden on a warm spring day, creating some wonderful landscape. Hang tough between now and then. Your daughter and son sound like gems - you must be a proud mama.
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Got the call from BS office - port going in on Wed 1/11 and 1st of 4 AC treatments starting on 1/12. Got an Rx for Lidocaine and I'm supposed to rub that on port 1 hour before treatment starts. I meet with onc nurse on 1/9 to sign consent forms and get other info. MO gave me tour of infusion ctr yesterday and got to see a woman's port - ick.
Anything else I should do to help me prepare?
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Char - Just get lots of rest and drink plenty of fluids before you start as well as during & after. There are a couple of threads that people have started on what to do to prepare, things like have pepcid, pepto etc... on hand. Also, if you've getting the Neulasta shot the day after each chemo to help your WBC - take a claritin the day of and for 2 days after the shot along with tylenol or aleve to help with the bone pain it may cause. I'll bump those threads for you.
Good luck!
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Char- after you rub in the Lidocaine cream, put some plastic wrap over it- I liked the press and seal wrap. It keeps the cream in place and doesn't get all over your shirt!
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I never had the cream, they just used freezing spray on me, it never really hurt. I think the anticipation of the pain was worse than any actual pain.
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My PS used the freezing spray on me whenever I had a fill, but the infusion nurses never offered it.
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Char - I just want to wish you good luck with chemo. I had the same regimen you're having, except I didn't have a port. It was much easier than I expected it to be. My side effects weren't too bad, and they were predictable after a while....I learned which days in the chemo cycle I might feel icky, and which days I'd feel good...so I was able to plan around it. I took time off from work but probably didn't need to....I hate my job, so it was a good excuse for a timeout
I live alone, which was a concern at first, but I was able to do everything I needed to do for myself. You can do this!!!! Wishing you the all the best!!! 0 -
Char, definitely use the cream as these ladies said. Be aware though that it might not help with any pain under the port from bruising since you just had it installed. I would make it clear to the chemo nurse that that the port is brand new and ask she take it easy when feeling for it and not to push down harder than she needs to for access.
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Happy New Year!
Did anyone have a known positive lymph node going into surgery? Did your SO remove all nodes under the arm on that side or just a few?
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Lisajcj - I had a known positive node and my BS removed level 1 and 2 nodes - 17 total.
My chemo nurse was a magician when it came to accessing my port. We never used anything to numb it and it didn't really hurt at all when she accessed it.
And the surgeon that installed it did such a great job - it never bothered me, and it was a very small profile port so you couldn't see it even when I wore a bathing suit.
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They knew I had at least 1 positive node so like Luvrving the Surgeon removed what he called the 2nd row. 3 of 18 positive.
Maggie
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How come everyone has gotten their ports out already, my onc wants me to keep mine for a year. It's not too bad, you don't notice it wearing close but it pokes out right where my bra strap it and everynow and then it gets caught on it, its a very weird feeling and I just creeps me out.
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My onc said 2 year and I said no way! Mine rubs on a nerve every now and then and it is aweful. We do not get along at all. She agreed that after my pet scan on the 13th of Jan we will discuss taking it out if I get the all clear...really praying I get my way!
Maggie
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I had a 2 positive nodes but only 1 stayed positive after doing chemo. At surgery they took out 8 nodes total. My doctor told me that it's only at the final path report that they know for sure how much they took out because "normal" nodes are so tiny. He explained that he took out a "grape" of nodes and the final pathology showed there were 8. Hope that helps.
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My surgeon took my port out when I had my BMX which was only 9 days after I finished chemo. I was grateful to have the port during chemo, but was more grateful when it was removed!
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My onc said I could get rid of it right away. Actually, my first onc at Dana Farber said I didn't have to get one at all (but I knew that could be a disaster as I have crappy veins), so it would have been pretty hard to say it couldn't come out. I decided it could go when I had a clean PET scan and that happened in October.
It's not like they couldn't put in another one should that ever become necessary, heaven forbid!
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Mags, I think they are awful but glad to know your onc likes to keep them in too. I don't think I'm getting any more scans unless I have symptons. Will this be your first pet scan? Good luck on the 13th!
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Michelle, Maggie & Babs, thanks so much for the information. My BS/OS recommends complete dissection of all nodes. I wonder if it is because I'm BRCA 1? I think I'll clarify it with him. Thanks!
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Thank you all for the tips. Ick....keeping the port in longer than absolutely necessary seems so....ick....I don't know how else to put that. Ick. Ick. Ick....I'm extremely squimish! Cringe. Ick.
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Char -- you will get used to your port and it will become no big deal. I kept mine in for several months after I was done with chemo, and had to go to the chemo infusion room once a month to get it flushed. I must admit I liked going back to see people and chat with the nurses. For me (and others, I know) one of the most unnerving things about being TN is that when you are done you are done -suddenly no appointments to go to, and suddenly you are not doing anything to get rid of cancer. Getting my port flushed monthly was a gentle way for me to be on ym own.
I never got lidacaine for accessing the port - it was just a quick poke and done.
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mccrimmon...not my first scan...had one before chemo started..That one was clear...this one will be too because I said so!
Char---I agree it is ICK...can't even stand to touch the thing
Maggie
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