Calling all TNs
Comments
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Naan1004 - I don't understand your situation very clearly. Your diagnosis is not that bad actually, being a Stage IIa and Grade 2 (most TN's are Grade 3) and no node involvement. It seems like you have taken all the chemo drugs which are the common ones, adrimycin, cytoxan and taxol, the same ones I got. How many treatments did you do? Why aren't you doing Rads? Did they find more cancer or what?
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Julie (Naan),
I've never heard of two rounds of chemo for the same tumor. Were they thinking of giving you the same chemo regimen again? (There is a lifetime limit on the amount of adriamycin that you can have because of the heart failure potential).
Did you not have radiation? I was told that with a lumpectomy, chemo AND radiation are always given, as this has shown to be the most effective treatment, based on clinical trials. Maybe consider a second opinion..... Good luck to you.
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Annie where are you going for radiaition? I have finished Chemo and am waiting to here from the Radiation Onologist in Palmeston North. I think i will proberly start in August. I have come through Chemo pretty well but feeling a bit tired
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I had a lumpectomy which showed no node involvement and my margins were all clear so my onc and surgeon both don't think I need radiation. My onc's rational for more chemo is to decrease my chance of recurrence since being TN there isn't any other treatment available, I'm 40 and having more chemo will help me increase my survival beyond 10 yrs?
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Hi Ladies hope you are having a good day and hopefully some rain to freshen the air for you.
Onvacation - last chemo congratulations, well done you clever girl. Probably will be joining you on Rads soon. I'm a bit apprehensive but I'm sure it will be go fine.
Tifj - although you have really hot summers, do you have really cold winters? Hope you and the kids enjoyed the fireworks.
Kathryn - "Dyed the lady fur neon pink: whatever will you get up to next. You just crack me up.
Karen - thankfully someone is coming in to train the old fellar on the coffee machine. I can't stand bitter coffee. Great great news that your tests were normal. You just keep on breathing away girl.
Lovelyface - why do the Indian ladies shave off all that beautful dark shiny hair, is there a reason for it. It seems such a shame they are such beautiful ladies. I wish I had hair like them.
Spica16 - I don't know how you cope with cancer and the MS as well. I think BC is bad enough without another illness to add to it. You are one very brave lady. We had a shave for cancer week recently and all the nurses and reception staff at work shaved their heads for me and the Doctor's all donated for it. Was so wonderful of them to do that for me. So yes, nurses and other people are inspirational when they do that sort of thing.
Luah - congratulations on your follow up and no issues. Woo hoo and on making nearly three years. You go girl.
Jan69 - "Berry Cobbler" sounds bloody nice to me. No girl you are not a loser, just normal. We have to have some incentives to get over this crappy BC you know.
Mags - don't overdo it with those 10 hr days. I'm working too and my stamina is not what it used to be and seems to be getting worse. Enjoy your fine cabernet, that will perk you up.
Gemmy1 - I'm with you and stressed about recurrence. Seems to be more and more on my mid lately. Its funny how animals sense something is not right. My little girl Chloe sits and looks at me funny until I put my glasses back on. She must think "my mum looks funny" or otherwise she is thinking something else to chew.
Marshajfox - Hi Marsha welcome to a wonderful group of ladies with sound knowledge and advice. I also had the swelling of my feet and neuropathy. I put a pillow in the bottom of my bed for my feet to go on and its helps take the swelling down. In ther morning they are much better. Hope this helps.
CharBB - so you look like Sinead O'Connor and cancer is just a "thorn in your side". What caused the penumonia during rads. Did you catch cold or was it the radiation.
Gabbi42 - Congratulations on finishing chemo. I will be going to Waikato for my rads. Yes I am feeling very tired too so not looking forward to the tiredness of radiation as well. Surely there has got to be something good coming for us soon.
Well ladies it was a long ride to get the coffee machine. It was such a beautiful day up there, and also a gorgeous day here apparently but we didn't have the coldness in the air that we have here and we knew as soon as we felt the cold that we were nearing home. We stopped overnight at a motel cause it was a long way for the old fellar to drive there and back in one day and we didn't leave until the afternoon so that made it easier for him and we had fish and chips for dinner last night, was yummy.
Have a good day. Keep cool if you can says envious me. Annie
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Well yesterday was def one of the worst days I have had in my life. My son -who is going through a divorce at 22yrs old- did not show up for work yesterday. He also was not answering his phone. Both completely out of character. So my hubby just in the car and raced over to his place thinking his depression had gotten the better of him. I cried the whole time waiting for a call to be sure he was ok. He had overslept. UGHH--relief and anger that he put us through that. I ended up going in to work to help out as it was terribly busy and I also have a newer employee who did not show up for a shift 2 days in a row. Came home mentally and physically exhausted. Gotta go in again today and tomorrow. Who says owning your own business is so great. I am determined that today WILL be a good day inspite of myself!
NAAN--no advice from here. Never heard of chemo again after you have finished and had surgery with clear margins. Did you have complete response??
Maggie
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Maggie - wow that had to be an emotional experience - so glad your son was ok!
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NAAN - I've heard of people doing more chemo, but I don't think I've heard of anyone having just a lumpectomy at your stage and NOT having radiation. Rads are usually recommended unless you have a MX, then it would depend on whether or not there were nodes involved. I think you should get a second opinion from a Radiation Oncologist.
Kathyrnn - how's your mom doing?
CS - you do such a great job mentioning everyone! Glad you had a nice excursion to get the coffee machine. And I can answer for Tif with your question about the weather. The Kansas City area normally has very hot weather in the summer, and there can be very, very cold days in the dead of winter. Winter doesn't last as long, though, as it does here in the northeast.
Maggie - glad your son was OK. I can only imagine how worried you all must have been.
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Annie- LUV ia quite right about the weather here! This past winter though was very mild and I think we are now paying for it with a brutal summer!! Hope you are feeling well today! Yes, we enjoyed the fireworks- we can also see the city display very well from our driveway!
Wow Mags! I can only imagine the fear in your heart when you couldn't reach your son!
Naan- I am with everyone else- seek a second opinion. I too have never heard of a second round of chemo with your stats or a lumpectomy without rads.
Welcome to all the new ladies. We are here to help and have a little fun (thank you Bernie and Annie for all the great jokes!)
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Naan - I would have fainted dead, if my once told me I had to go back to chemo. I've never heard of this either.
CharB - woo hoo! So glad treatment is behind you. Go live!
Jan - I hope you are able to get your blood sugar level down.
Annie - sounds like you and the OF
had a nice getaway. It is hotter than blue blazes here! Poor Augie, has to do all his business in 10 minutes, as that's about all I can take!0 -
Naan - please get away from this doctor, as chemo twice - I have never heard of it. Especially in your case, you should have Rads. In addition to all that you have already had, the normal course of treatment is to add Rads to that. I would not have another round of chemo, no way, unless there was mets. Please be careful.
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Nann: Yes, I have heard of chemo pre and post surgery, usually 3 treatments before, and 3 after. It is not all that unusual. The idea is to shrink the tumour first and clean up any stray cells afterwards. Same total amount of chemo as any of us have had in one longer shot.
Is that what your doc is recommending? If you have already done 6 treatments, I would say, pass on more if your surgery came out clean. Besides, you are only allowed a certain lifetime amount of the adriamyacin.
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Ladies, I am so very very very lethargic. I know something is wrong. The endocronologist, remember that doc who told me that he did not appreciate me calling twice, well, I am still in the process of going back to seeing my primary care and getting anothr endocronoligist to ask for his second opinion.
My cortisol levels and other tests are normal, so the doctor had told me I did not have any thyroid related problems, except for that nodule. But I have heard that one has to take a 24 hour urine test, or at least have a saliva test which is more accurate for testing thyroid functions. I personally feel that I am suffereing from insufficient adrenal function. Can anyone please help me with this situation. Who should I see, and what should I say? There is an internet website called womenshealthnetwork.com - does anyone subscribe to it. They swear that they know how to balance adrenal but I am too afraid to do anything untraditional. In other words, why aren't the traditional doctors able to tell from blood tests if someone has adrenal insufficiency. My cortisol level taken at 7 am. was 13.3 within normal range. FSH is 68.5 (within normal), ACTH is 21(6-58 is normal). What is wrong with me? Please help, if someone was feeling like me. When I wake up in the morning, I am tired, after work, I am tired, no matter how much rest I have, I am tired. My hair is also really thinning out.
I took a tumor marker test again CA27.29 and am waiting for results on Monday. Normal range is up to 34, mine was risen from 8 to 20, but still within normal range. I think it had risen due to thyroid biopsy, but onco. says no, it won't do it. Anyone has any adrenal insufficiency information, please tell me about it, please. Thanks.
Edited by Mods to update link0 -
Lovely: Sorry you're feeling so bad, no suggestions here, hope someone will be along shortly.
Ladies: Will be off the boards for a while as my sister (also a cancer survivor) and I are taking a 12-day trip to Newfoundland and Labrador. Hiking, whale watching, iceberg sighting, peace and calm, another world. Can't wait! Wishing you all good health, minimal side effects (for those in treatment) and cherished summer moments for all.
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Luah, I will miss your wisdom here while you are gone. I almost depend on you, to hear from you. In a way you are very lucky, although I don't mean that two sisters should get cancer, but in a way you two can connect with each other so closely. My sister and I have fallen apart so badly after my experience. I didn't feel that she was in it with me, and that she should have come to visit me no matter what, from New Zealand, but she did not and now she is talking to me asking me to come to her daughter's wedding, as if nothing happened. I honestly don't know how to deal with any of my family members anymore. I feel they all left me alone, too alone when I needed them. So, in a way, you can really connect with your sister and have a wonderful time since you understand each other so well, now, especially after this experience. We will miss you. Wishing you a wonderful time, and make a lot of cherished memories to last a lifetime.
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Hi Ladies
Mags - thank God for over sleeping. Can imagine how worried you were and being a mum of fearing the worst as well. When my daughter was going through a marriage break up I knew she was depressed and I felt just like you if I couldn't get hold of her. So very glad all was well. I'm sure your son is going to be fine given a little time.
Naan - I don't know much about getting chemo twice but I agree with the other ladies, if in doubt get a 2nd opinion to put your mind at rest.
Karen - your poor little Augie. Probably so very hot for him too. Send him to me. My Chole will teach him a few tricks!!
Luah - sounds like a wonderful trip you and your dear sister will be taking together. Can just imagine the peace and calm you will both be feeling and so lovely that you can be together in beautiful surroundings. Have a wonderful time, you both deserve it so much and don't forget to take lots of pics.
Have a good day ladies. Praying for some rain for all those that need some. Annie
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Two old ladies were rocking in their chairs
on the nursing home porch.
One says "Martha, do you remember the minuet?"
Martha answers,
"Heck, I don't even remember the ones I slept with."0 -
Maggie, what is a complete response, all I know is my tumor didn't shrink at all, but at least I had no mets.
Luah, I had 8 treatments and he wants me to have 4 more!0 -
Anybody know any good TN specializing onc in southern CA area?
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Naan - was it Taxol you was talking about because you can have 12 of those.
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Complete response or PCR means that there is no longer any evidence of the disease in the tissues. You can google to get the full definition. Perhaps your Onc does not feel that the chemo got rid of all the diseased cells and wishes to do more chemo to "clean up"? I would definitely find out what the rationale is there and as the others suggested get another opinion.
Maggie
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CS, I have already had 4 AC every 3 wks then 12 Taxol weekly, they want to give me 4 additional A and Taxane every 2-3wks or 12 weekly.
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Ladies - I would caution all of us to be careful about giving medical advice to each other. I am a little concerned about things that have been said to Naan - regarding doing more chemo, don't do it, get another onc, you can have 12 of that kind etc. None of us are in full possession of all the facts regarding anyone's dx and tx, unlike one's oncologist.
The most important thing we can do is support each other as we go through treatment.
edited for typo
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Luah - have a lovely time!
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Have any of you tried drinking green tea for prevention? I am hearing both sides, it does help, it doesn't help. Guess it can't hurt, and now that I'm done with chemo taking the antioxidants should be good. Just wondered if anyone is drinking it now that they had a diagnosis.
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Gill, thanks for the input, I really wanted to know if anyone else was in my situation with my similar dx, cause I have never heard of this.
Thanks to all who have given me input, it is up to me to decide what's best for me in the long run, but all your input will be taken into consideration since more chemo can't be taken lightly.0 -
Naan, Julie---I wish you strength and wisdom for all your decisions ahead. If you do find an oncologist specializing in TN, please let me know. I live about 300 miles from LA and don't want to go back to my current center if I need more treatment. You might google UCLA oncologists and see what shows up. I have a vague memory that there is one on its list---though I could be wrong. Jan
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onvacation - i drink green tea ALL THE TIME, every day! it can't hurt.. i drink regular in the morning and decaf at night
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Hello everyone! My sister is the one with TNBC. I joined this club to find out all the information I can possibly get. My sister is an amazing person and I want to be by her side thru all of this. My sister is 33 years young and is up for the challenge! Cancer picked the wrong person to mess with
Everything I read before was nothing but negative news. I have enjoyed reading the stories on all the amazing survivors out there! 0
