Calling all TNs
Comments
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Hoo-boy! I noticed little fur-less patches on Lovey's nose and Lucy's ear, so took them in to the vet. Lucy also still had a big scab from where she got her rabies shot last month - she's a long-haired kitty, so I thought it was just stuck. Long story short - the injection site was infected and they both have ringworm! Eek! I asked if this could have been something they'd been carrying dormant since I got them from the shelter, and was told yes.
And it's a 6-8 week course of treatment with oral and topical antifungals and a once-weekly antifungal shampoo. And Lucy is on antibiotics. I'm going to leave the shampoo until tomorrow when I can buy some elbow-length dish-washing gloves that will hopefully limit the shredding of me.
Best of all? I get to take anti-fungals for the next 4 weeks, too, as they could give it to me. And I will need to do daily checks for a rash on myself. And of course, launder all of their and my bedding frequently and spray everything I can't launder with a 1:20 bleach solution frequently. It's going to be a long 6-8 weeks!
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Riley: Ugh, I have been through that and it's no picnic. Good luck!
Bak: In answer to your questions re: chickens, my MIL is going to give us some of theres so as soon as we get a chicken coop/run we will be ready to go. My DH plans to heat it during the winter so they don't die of frostbite.
Laurjane: I truly hope this new coctail is your magic bullet. This must be such a scary time to be going through so much yet you still come on here all sunshine and beauty. I hope you have an amazing time in New York and I can't wait to see the results!
Suze: Hoping they find something for you that works, too. You are both an inspiration to us all.
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MBJ - is the 6-8 weeks of treatment an accurate estimate, or does it take even longer?
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Had my chest wall mass excised yesterday. CT showed an enlarged (6mm) lymph node, but nothing in lungs, abdomen or pelvis. US didn't even find a lymph node, so the surgeon didn't go looking. I think that enlarged lymph might have just been overworked as being the only lymph node to deal with radiation! Not feeling any pain - good thing about a BMX is that it cuts all the nerve endings! I'll continue on radiation next week and add an axillary field, so that'll get that remaining lymph node.
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Survivire: Great News!!!!
Teka: You have to be vigilant or it won't go away.
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Survivor2Be - great news on the clear CT! I hope you heal quickly from the surgery. I can tell you that the areas that I had radiated are still completely clear, it worked really well on my supraclavicular nodes.
riley - I hope it goes smoothly with the kittens! 6-8 weeks, ugh!!
Lovelyface - thank you so much for your words, they mean more than I can say. This disease is awful, and I plan to fight it with every ounce of strength I have. I still have hope - there are some who go into remission for a long time. But I do try and be realistic so that I don't lose sight of the important things I still want to accomplish. And the longer I stick around, the more things that can become available!
LJ - thinking of you.
MBJ - you'll love the chickens. My oldest adores helping my neighbor with hers
.For those just starting chemo, I'm glad to hear everything is going okay. It sucks, but it will be over sooner than you think!
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Still waiting on the trial. The oncologists at DF are putting pressure on the drug company to get started, because there are now multiple women waiting, off treatment. I was told it would almost definitely start before the 15th, to hang in there. Hard to do when I'm hacking up a lung!! I just have to remind myself my lungs are clear...this is just nodes causing the cough.
Busy day today, always helps. Have a good day everyone!
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hi all, got my shot so far only bone pain is my toes and i have a huge headache,i thought they said big bones lol.
also i can feel a sore coming on in my mouth,i've been using biotene any other suggestions?
my dr is prescribing steroids for 3 days after chemo take 3x a day ,there was a mixup in communication with pharmacy. what are these for and the most important question will they cause me to gain weight?
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Feeling crappy so probably taking a few days break...Feels kinda like I have the flu, aches, shakes, etc. I have a pain pill they said I can take so I think I will just take the pills and sleep a few days. The 4th HER2 test the NP wanted me to wait for (which we knew would come back neg) came back negative today, so I think I made a good call.
Survivor: Awesome news.
Kymn: I can't even imagine anyone being so cruel and heartless, hugs and prayers your way.
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belle, I gargled with salt water several times a day when I had mouth sores. Don't swallow it! One of the chemo nurses also recommended something called Gly-oxide. I had to hunt around a little bit, but found it at CVS. You put a few drops on the sore and then try to hold it in your mouth for a minute or two, then swish and spit. I did that a couple times a day as well and I think it helped clear them up faster.
The steroids are to reduce the SEs of chemo, but I hated taking them. I would be wired and unable to sleep, my handwriting looked like a 5 year-old's due to 'micro-tremors', and yes, I gained weight. I managed to get some of it off, but when I started taking Tamoxifen (my tumor was 8% ER+), the weight all came back and brought a few more pounds with it.
Hang in there!
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Waiting for my bs appoint to find out mri results. Feel like I am gonna puke! Teka-i am kinda worried about infection from ear piercing but my counts are good and I will keep them super clean! I know it could still happen but I just went for it
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Laurajane,
I hope you have a great time in New York and hope you get to do some sculpting. If you ever want to share your work with us, I would love to see it - or some of your landscape design. I used to love to garden, too.
Suze, I'm so sorry you are still having to wait. If you think a huge barrage of letters from all of us to the drug companies would help, well, I'm sure a bunch of us would oblige. What are they waiting on!!! Grrr....
Swanny, thanks for checking in! Good to hear you are doing well.
Riley, I'm glad your kitties are in your hands - sounds like they have a good "momma" to take care of them and hopefully for your sake and theirs, the RW will be gone quickly.
Bak, hang in there - I hate waiting for scan results. I have CTs /bone scan next week and I'm already getting squirrelly.
Kymn, I'm so sorry you are dealing with this during this already incredibly difficult time. I will never understand how some people can seemingly turn a switch off in terms of their emotions, but I've been on the receiving end of some of this kind of behavior during this time, too. You will get through this, and so will your children, no matter how hard it is right now.
Survivor, glad for the good news on your scan!
Bak, just this morning I tried to put on earrings for the first time in over 9 months and found that righty had grown together! I was thinking of getting mine repierced, too.
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Hello all TNS - I just found out today I will be joining you (if you will have me)
I am a 37 year old mother of two young children and a proud Canadian, eh?
I was diagnosed on Sept 2 with IDC and had a lumpectomy and SNB done on Sept 16th. I had my follow up appointment with my surgeon and found out my triple negative status. It really threw me for a loop as my mom had BC 13 years ago and was ER positive and responded well to just radiation and Tamoxifan, so I naively thought this would be my future as well. So now I am beginning my research into the Triple negative world and frankly I'm very scared. I'm meeting my medical oncologist next week for the first time and hope to find out a game plan then.
Thanks for having me
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Welcome MissMollyB! You'll find a wonderful group of ladies here to guide you on this crappy journey!
Who can tell me about bone scans? I saw my onc today for a follow-up and he scheduled me for a bone scan and x-ray due to intense tenderness in my lower spine (L4). He thinks it is probably strain from physical therapy for my frozen shoulder (I tend to twist my back when my shoulder is stretched), but wants to check it out to be safe. I am a bit scared!
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Welcome MissMolly. Sorry you are here but you'll get a lot of support from the wonderful ladies on this thread. Where in Canada are you located? I'm in Mississauga just outside of Toronto.
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I had a bit of an anxiety attack while waiting in the doc office but it turned out all good. All cancer seems to be resolved by mri and ct standards. I know path can tell a different story. My bmx is now scheduled for november 30th. Now waiting for Chemo # 8. 4 more to go after today.
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Hi Sugar77 - thanks for the Welcome.
What a coincidence - I'm from Mississauga as well. I had surgery and will be getting all my treatments at Credit Valley, I'm hoping their new-ish Cancer Centre makes this as easy as possible. So far I'm impressed at how quickly the process has moved from suspicion to diagnosis, to surgery.
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Welcome MissMollyB...this is a great group of supportive women with tremendous knowledge of Trip Neg. Gather all you can so you can start getting your plan of attack in place. There is also another site just for triple negs...its' tnbcfoundation.org. Another site full of smart women who have been there!
Maggie
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Molly - come out to the Run for the Cure on Sunday at UofT Mississauga. I'm this year's speaker and I make mention to triple negative and the need for research in my speech. I'll send you a PM (private message).
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Sugar77 - PM missmolly about our little TN group too - we could add her to the mailing list, if she wants.
missmolly: Feel free to introduce yourself over on the Canadian board too. Lots of local knowledge there. I know this is a scary time for you... but when you have a treatment plan in place, you'll feel much better. While TN is aggressive, most of us get through treatment and come out the other side, healthy again. Lots of wonderful women here to help you along the way.
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sugar77: And congrats on speaking at the Run for the Cure. You go girl!
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Tifj- I had a bone scan at initial dx. It's like a PET scan, same position in the machine with your arms above your head the whole time. It scans you from head to toes. They give you an injection before and I think you have to wait an hour or so before going in.
MissMollyB- Welcome to the TNS group. Happy you found us. Don't go to much on the internet for information on TN because it will only scare you (even if we all know you will because we all did it too
). Stick with what your doctors tell you and you will also get great info on this TN board. Good luck. 0 -
Sugar77- congrats from me also. I just know you will do us proud.
MissMollyB- I know you scared and overloaded w/ info right now breathe in and out and follow your heart.You are in the right place surrounded by survivors and survivors to be. No question is to crazy to ask.
((HUGS))
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That's great, Sugar! And welcome, Molly. The uncertainty right after diagnosis is so bad. If you are having problems with anxiety and/or sleeping (because your brain is going 90 MPH), don't hesitate to ask your docs for something to help with that. I was given a sleeping pill and an anti-depressant and they really helped. Keep us posted on your treatment!
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Miss Molly B,
I'm also triple negative and also from mississauga. I'm 27 years old (bet you thought you were the youngest person you know with breast cancer) and was also at credit valley! I reached out to sugar at the beginning of my diagnosis and she has helped me so much throughout this process. Let me know if you have any questions about cvh or triple negative. I'm at the end of chemo, the beginning and the anticipation is the worst. It will get better I promise. You'll get through it
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Thanks Babs! I have never had a PET either. I have a frozen shoulder-I hope I can get and keep my arms above my head!
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TifJ - I had a frozen shoulder earlier this year. I didn't pay any attention for a while - just thought this was what it was going to be like, with limited ROM etc. Then I mentioned it at an oncology visit and he wrote me a prescription for physical therapy. I happened to see my PCP around the same time and he checked it out and said yes, frozen shoulder. Well, after just 2 PT visits and doing the exercises, there was a huge improvement. I don't know if you are having tx, but it was certainly worthwhile for me.
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Fighter, Lipo? I'm envious.
LauraJane, I'm thinking of you and hope you have a sweet time in NY.
Bak, Wow, the waiting is so difficult. Glad for the good news.
MissMollyB, have you talked with your doctor about genetic testing?
Kymm, Bless your heart. I'm sorry you have this added trouble.
Survivor, Good news!
Suze, Oh I hope they hurry up with the clinical trial for you! Your attitude helps all of us, and I'm sending you loving thoughts.
And all of you, I hope you have a good weekend. I'm off this weekend for a 10 hour drive to the Mississippi Delta, where my husband will meet up with some old college friends who haven't seen each other in decades. Hmmm...not too sure about this, but really, I'm thankful for the fall weather, my husband, my animals and children and just being alive.
Susan
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Gilly- I have been dealing with the shoulder since March. It is getting better-slowly. I have been doing therapy since May. My orthopedic Dr. says it can take a year or more to resolve!
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Luah - hi, I let Molly know about our TN group. Thanks for the encouragement about the speech on Sunday! It's scary for me to think of speaking in front of 3500+ people but cancer is scarier and I say that in my speech.
The group Luah and I are referring to is an informal support group comprising about 16 or so triple negative women in the Mississauga/Toronto area. We get together every couple of months in person and also keep in touch via email. Most of the members are not on BCO...but a few of us post here. If there are any TNs in our area who are interested, please send me a PM.
Suze and LauraJane - I've been thinking about you both a lot these days and am hoping for the best for both of you.
Kymn - you're such a strong beautiful woman...always keep that in mind. You WILL get through this hurdle....promise!
MBJ - your new move sounds like a big change and a very good one at that. It's a fresh new start and that's good for the soul. Will you be baking lots more of those great pies that you had in one of your Avatar photos?
Gilly and Tifj - sorry to hear about the sore shoulders. I bought a TENS/EMS machine thing a few years ago from my physiotherapist when I had some shoulder and neck problems. This was before BC and I found it really helped a lot.
kyroheal (Sandy) - nice to see your post on here today. See you on Sunday!
BTW - Sandy's in the run, too, and her team has raised a ton of money -- thousands. Good for you!!!! You and your team are making a difference.
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Was anyone else there at the Justin Herman Plaza, San Francisco BC walk on Sunday, the 25th? Just wondering, because I was there, walking in the rain. My eyes just kept on searching for women with dark pink shirts with the words "Survivor" on the side, although I must say I felt there weren't as many as I thought would be there. Others wore white with pink writing. Overall, an uplifting experiene to see that so many people are fighting for a cure for this disease, the disease which I have had!!!!
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