Calling all TNs
Comments
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I took the article with me to my MO appointment today. He said he had already seen it and in fact knew the researcher. He said that even if he had known the results of the study before he prescribed my treatment that he would still do the Taxol because that is the best they have right now for treating TN and will be used until something better is found. He said that the study looked promising as far as finding the TGF-b inhibitor, but it has only been tested in mice and has not been tested in humans. He said if it does at some point get approved for use that he will make sure I get it. He said that TN is not the only cancer that can have cells that sit dormat until a later time and they don't really know what to do about them either. He did tell me the first visit that I had with him that they really don't know how to treat TN but that the treatment he was prescribing was the standard treatment for now. As Luah says, we can be thankful that so much research is being done in this area and hopefully this study will help us down the road.
He gave me Lyrica to take for my neuropathy today -- just a small dose to take at night. He said to try it for a couple of weeks. I asked when my port would come out and he said in about a year if PET scan was all clear at that time. He also told me not to color or perm my hair until he said it was ok. He didn't say how long that would be though. He said it could cause it to come back out. So maybe I'll be used to the white by that time and just leave it alone. I don't have to go back to see him for 6 weeks.
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Luah...again, you are the voice of reason.
5thSib...I have the feeling if I asked my MO about this latest study, his answer would be the same as your MO's.
Until they find something different, we need to use whatever they have.
I also decided to just keep my grey hair and deal with it. It's been 14 months now and it continues to come back in darker... at my age (69) it was already starting to come in grey...so what the heck! No more colouring for me. One less chemical!
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NavyMom - I think I saw you ask how to reduce cholesteral recently. I was just reading a brief little blurb from a blog-friend. She was saying how great beets are for cholesteral. I haven't checked this out independently, but I thought you might be interested. How are you? Were you able to make any turtles? I've got 50 lap quilts in some stage of completion. About 20 are ready to be delivered, but I want to finish them all before summer.
I've had some medical issues for the last several months. We thought the medication I was prescribed in Feb. to treat some severe headaches was what was making me sick. Turns out I had meningitis. I'm just getting over that (along with lumbar pucture,etc.) and now they have found I have a huge nodule in my thyroid. I have a biopsy this afternoon.
Wishing all a beautiful spring day. Wishing Boston a quick resolution and recovery. Jan
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Hi, I've just had some disconcerting news about the pathology results from my surgery. Very confusing.
Does anyone know who are the top experts on TNBC in the US so I might send my path reports to them and arrange to pay for a conference call.
I live I the Washington DC area, but location is not a problem.
Thanks for any help you might provide. I'm kinda falling apart here emotionally so I'll leave it at that for now.
Peggy0 -
Hello Jan, I have not made any turtles yet. Had cataract surgery both eyes. Just got cleared to get new glasses and due to pick them up on Wednesday. Very hard to sew when you can't see well. YAY.
I do like lots of veggies...But beets taste like dirt to me. I spoke with my MO about the cholesterol issue. She recommended red rice yeast supplement Said she takes it herself for cholesterol reasons. Told me her level dropped 50 pts so far. So I am giving it a try.
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Dear Jan69 - good luck with the thyroid biopsy. You'll let us know the results when you get them, I hope.
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NavyMom - Beets taste like dirt? Wow! I love beets, especially pickled. I hope your eyes allow you to get back to doing some fun stuff. I think of you and your son often. Good luck with the red rice. Hope it works for you.
Nail 12 -Thanks for your concern. I have to wait until late next week for results and will share the outcome. It turns out that it isn't my thyroid, but parathyroid possibly. Doctor couldn't tell--nodule is very deep. Oh my!
Peggy - Holding your hand while you wait for some suggestions.
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Peggy -
http://www.wellness.com/dir/2396288/oncologist/nc/chapel-hill/lisa-carey-hemotalogy--oncology-clinic-md
Dr. Lisa Carey - Chapel Hill0 -
Thank you OBXK, I will certainly look into Dr. Lisa Carey.
Jan 69, I appreciate your support as well. If it weren't for these boards I think I would have gone stark-raving mad during this whole process.
Peggy
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OBXK, how are you feeling? Did the reaction in your hands resolve itself? What is your Xeloda schedule?
I live alone so my son (he's 30) is flying in tomorrow to stay with me for the first week. Monday early I have the port placement surgery. They will leave it accessed and I will go for labs, see my MO, then have the Xeloda by mouth and the Ixempra by IV. I also get benedryl, famotidine and dexamethasone along with the Ixempra.
I was feeling pretty tense about it all yesterday, even after a walk in the sunshine and lunch with friends so I took a lorazepam. It was a miracle....or drugs, but I felt a LOT better.
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Navymom - beets DO taste like dirt. Sometimes, anyway. But mostly I love them. They are so beautiful.
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Good morning ladies.
Bak - you are not whiny at all. You have been on the biggest roller coater of your life and have come through so much. It is natural to get down as we all seem to be at the moment but you will bounce back. Re your hubbys comments, perhaps he is feeling a bit low as well. Do you remember when you left work, for good, and just walked out, he was there ready to give you a hug. Mine would have said "you will go back tomorrow and say you didn't mean it, wont you" lol. (He would obviously be thinking of my wages again lol). I hope he is now giving you the emotional support that you need and you can be there for each other. Sometimes we have to force ourselves to be happy and thankful when we aren't and I think only the ladies on here will understand that. My dear old fella is convinced I am cured and won't have it any other way even though I say, what if, so I hope to God is he right.
By the way what is mmj plants. Is that marijuana? If it is, it's not legal in NZ which is unfortunate if you say it helps. I could do with some of those cookies.
Mcclure - I had AC and then Paxitaxol (Taxol for short). It seems to be a standard treatment here. Yes it is disturbing to hear those things about it so that is why I don't follow google or read all the blogs or I think I would go mad. I'm just hoping that what they gave me works.
Jan - my dear girl you have been through the wringer. Meningitis and now a parathyroid nodule. I hope everything turns out to be ok for you. From what I type at work, thyroid problems seem to be related to cancer for some reason.
Navymom - I think I might keep away from beets if they taste like dirt. Thing is how do you know what dirt tastes like lol
Re hair. Mine came in grey with silver tips and it looks determined to stay that way. I surely won't be colouring it if it can bring back the cancer and at 66 I don't really mind so I'll just put up with it.
Ladies just twist your lovely lips into a smile even though you may not feel like it and you never know it may work. Thinking of you all and sending big hugs.
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I thank God every day for helping me find all you wonderful ladies.
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Today I went for a walk with the kids and for the first time in a long time it felt good. Now if I could only figure out what I am going to cook these wild children for dinner
Tomorrow I can eat a HUGE breakfast and then nothing for the rest of the day until after my hysterectomy on Monday @ 11. I think it's odd they have that long of a food restriction. It's going to suck since my DH is a chef and Sunday is his only day off. Oh well...what can you do?!?!0 -
Jan69 -- I love beets too, at least the kind that come in the can. I hope the biopsy results come back good.
PeggySull -- thinking about you.0 -
Quick comment on the taxol study..my onc told me 4 years ago...that in 5 years there would be more studies/treatments than there are "now"...A co-worker of mine 10 years ago had 4 ac's...that was it...then me...5 years later had 4 a/cs and 4 taxol...he said that things are constantly changing and yes they are...it is a fact that chemo does not work very well on slow growing cancer cells...
I dunno...but I think that a slow growing cancer cell is maybe not such a bad thing...
I know that you ladies starting taxol may be freaking a bit...like why go through this treatment if you don't have too...and I agree..but the dang thing is that "they" really don't know for sure...
Kinda sucks doesn't it?
Anyway..welcome to the new ladies..hope you find the friendship and information you need on this site....believe me these ladies will get you through
and I hate hearing about the reocurrences...it stinks....
Has anyone heard from Inmate...miss her
Hey Cocker...how are things....thanks for your concern about the Boston bombing....but they got them....We American's are pretty strong...just like you New Zealanders....
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Navy Mom,
You are smart to stay of the statins. My primary care doc wanted me on them ~ they brought my cholesterol down 100 points with no change in diet or exercise, but my MO said no to the statins because they stress the liver and my liver enzymes had been elevated for years since I was on long-term antibiotics for an infection post prophylactic mastectomy w/ expander implant. But my liver enzymes had slowly improved. Good thing my liver was OK when I developed a new triple neg primary in the breast that I'd had BC w/A/C plus mastectomy 11 years before. My surgeon didn't tell me that they can't be sure to remove every breast cell with today's "Skin Sparing" mastectomy. So my NEW surgeon took a thin layer of muscle plus the breast tissue that had grown back.+ marble sized BC in the small handful of cells that grew back. This time T/C plus 28 rads. So I'm almost 2 years out from the second primary, 13 years out from the first primary. Hope everyone is doing OK.0 -
Phyllis - my mottled palms, seem to have resolved themselves. So far, it has not been bad. Today fatigue showed up, so I am resting.
I hope you do well with your new treatment.
Annie - hello sweetie!
Wishing everyone a good Sunday!0 -
Titan great to see your post, been awhile!! The Boston bombings- what a terrible thing to happen. Seeing that little lads face keeps coming to mind that was only waiting for his dad to finish the race brings me to tears and all the other people with so many injuries. What is it with these so-called human beings that they can do this to hurt or kill innocent people. I do so hope they get their just deserts and more. Its even worse when they kill and then take the easy way out and kill themselves. I'm all for justice and an eye for an eye. Yes you are a strong caring race who doesn't deserve these things that keep happening so I hope you all keep safe.
Haven't heard from Inmate or a lot of the ladies for a while now. Hope they haven't forgotten us because you and they helped me through hell. May be they are just taking a break.
Have you run any races lately. Hope you are keeping up with the exercise (like me) !!!
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Those of you who think beets taste like dirt, you might try washing the dirt off before you cook them. lol
Cocker, I have been hiding in the bushes lately. So much going on that keeping up with everyone seemed too much. Right now it seems I'm sitting in waiting rooms or waiting for phone calls to tell which waiting room to wait in next. So tired of it all. DH gives me B12 shots 3 times a week. I think that's giving me the little energy I have.
I had my "healthy" breast removed in October. I love being a flattop. No bras and no forms. And in January I changed oncologists. Old one was old and tired, just like me.
Titan, I've been wondering about Inmate too. I sure hope she's OK.
OBXKaren, I think about you too and wishing you easy and successful treatments.
Jenjen, Holding you close Monday.
5th Sib, My beets mostly come from cans, too, but I'm planting beet seeds tomorrow. See how that works.
Wishing everyone a Sunday full of joy. Jan
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yeah...ran one 2 weeks ago...took 3rd in my age group....and yes..there were more than 3 in my age group...
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Good one Titan made me giggle. At least you wasn't last or was it 3rd to last. Listen to me, the lazy sod who doesn't know what exercise is apart from getting up from my desk and walking three feet to the fax and even then I'd stretch if it wasn't three feet lol.
Jan thats got to be good no bras and no prosthesis. I really hate the darn thing. Its hot in summer and rubs on the scar sometimes plus I have just ordered two new ones and they cost me an arm and a leg all because they have a little bit of extra material in them where the prosthesis goes. The only good thing is they are now coming out in nicer colours than white, buff, black and blue. I ordered a rose colour and a lilac one. The lady said don't you want pink. Giveme a break, pink only reminds me of one thing.
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Jenjen - Glad you got the walk with your kids! I'll be thinking about you on Monday.
Phyllis0 -
Jenjen I also will be thinking of you. Its not after the operation that they worry about you being sick with the anaesthetic its during the op so no food for you girl. You will be able to make up for it as soon as you are better. I had a hysterectomy when I was 32 and it was the best thing I ever did. No more menses has gotta be a good thing. Big hug to you.
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to PhgrahamP - best wishes as you start through your second go-round of chemo. That's something we all have in the back of our minds - with a feeling of dread.
I did the "Race for the Cure" yesterday in Inidanapolis. Didn't think I'd EVER want to do that...all that overwhelming pink stuff. But it was a good celebration, and I needed a good fast 3 mile walk anyway.
I'd post a picture if I only knew how.0 -
good for you natl12! I still haven't been able to do the pink stuff yet...not ready....I do run two 5k's in Ohio though..one for a local girl that had tn and another in Columbus for Stefanie Speelman...also tn...it's pretty rough sometimes....I honestly feel that I could cry the whole way through it.
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Shirley I get treatment every 3 weeks for 4 treatments (she said 3 then scan) but they scheduled me for 4. She may be just keeping me on the calendar. If all is ok she said she would stop treatment and start me on radiation, if not we will proceed.
Thanks for the story on Taxol but man does that upset me because I did Taxol too and my cancer is back. I keep getting all these e-mails don't do chemo as it feeds cancer and I kept telling myself I have no choice so just ignore it. I paid PURE HELL on Taxol with pain and now just to learn I probably went through all that hell only to feed my cancer and get to go through it again. I wonder if they will find the same thing on Taxotere, I am scared to proceed now.
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Hey Ladies......I am happy to report that so far even though I have had some rough days (like 3 with fever) I have still been able to go and do things. I would not have been those days. They told me that I would be at my lowest on day 9 with the risk of catching something. So, I donned on my lovely little mask and went to the vet yesterday and the park today....I was sportin' it....:)
Peggy: I just changed oncologist so that I could be with one who specialized in TNBC ......It is the Emory Winship Cancer Institute in Atlanta, Ga. The doctors are Amelia Zelnac and Ruth O'Reaganhttps://winshipcancer.emory.edu/find-a-physician/WinshipContentPage.aspx?nd=807&id=1124&typ=33
https://winshipcancer.emory.edu/find-a-physician/WinshipContentPage.aspx?nd=807&id=268&typ=33
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Phyllis: I am so glad that your son can help you......my hubby tries his best but he has to work and I have no one else to help. I have one niece that could but she would not pee on you if you were on fire.......and neither would my neighbors.
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OBXK: Thank you.......I am feeling better
***************************Bak94: Thank you and I am feeling better, but yeah memories turned back into reality.....:(
We all have days where the pitty takes over......don't be to hard on yourself you are dealing with alot.
I have advanced arthiritis in my hip so I know what you are talking about. I had a touch of it but I think chemo just sent it over the edge the past two years. Inflammation feeds cancer from what I understand too and all the foods that they tell me causes inflammation is all the food I love to eat......:( It is hard to just give everything up.
*****************************Luah good way to look at the Taxol story but it is hard when you are the one that it came back on and you received that drug and now being treated with the sister drug of it. If you or anyone sees an article on the taxotere please let me know. However, it did make me feel a little better after reading your message.....:)
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I hope I did not miss anyone and I am sorry for those that are going through this for the first time, and the ones going it yet again..........this sure sucks and there is no other way to put it............PURE HELL!!!0 -
I like beets and I too think they taste like dirt so I guess I like dirt
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After reading the article on Taxol it has me wondering how many of us with recurrences were on Taxol?
Also, how many of us with recurrence's were on the Neulasta shot?
I am just wondering if the Neulasta is going to end up being one of those "if you or a loved one took" commercials. We take chemo to kill the cancer which kills the cells and then we take this drug to build it back up at the same time......is that not contradictory, when you really think about it?
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