Calling all TNs
Comments
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Congrats Jenn on being lucky 200!
So, DC is a bust by the sounds of it. Oh well, I'll be there enjoying with my sister and I'm so looking forward to our little getaway. If anybody else is going to be there, let me know and maybe we can hookup for lunch or something.
Wow, this is a busy thread today. I'm in the race for lucky 300, too.
Good night ladies.
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Angelisa..the closest I have been to Springfield is Ada. my son goes to ONU...but he is transferring to OSU next fall.....if you ever get close to Cleveland, Wooster, Canton, or Akron let me know...OK? We could tour Amish country together...oh and my husband has a lung nodule..it is calcified..he was told that alot of people have lung calicifications in Ohio..maybe the farming, the industry, who knows..but it is very common.
Jenn..if you win the lottery please remember your buds on BCO..ok?
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Sugar- have a great time with your sister in DC! You guys will have fun together.
Titan- I'm home alone at the moment so I'll just have to content myself with puppies licking my bare feet...
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Titan: It's common for Ohio to have the histo... something to do with being near the Ohio River. It has to do with bird droppings... chickens... bats... and it apparently is prevelant in the area. I was also told that tons of Ohioans have the nodules but have no idea they are there. My BS has them! I don't know when I'll be near Cleveland, but I've never been to Amish country and it sounds interesting. I will definitely let you know if I'm gonna be in the area.0
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Melissa: Gladto hear that even though you have the nose perforation, Avastin did kick BC's a$#!!! congratulations.
Angelissa: I am glad your nodules are nothing and I hope it stays that way!!!!
Jenn: Congrats on making it to page 200 first-guess we will have to race you to 300!
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I saw the flurries this afternoon and cussed out that damn groundhog for lying again! And the snow stopped and then it melted. Hmm...
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Thx Luah - we have discussed doing the T first - my onc feels that the trials may be being misquoted as they were all done on people with lumpectomies (memory a bit hazy here) not mastectomies - or were they done on pre-surgery BC's??? It's all very confusing as there are theories and options and new findings all over the place - who knows what to believe. I think that's the thing I hate most - the uncertainty - and the fact it seems to be an art, not a science in so many ways; albeit an art where I don't have the ability or knowledge to determine the skill of the artist!
Kymn - thanks for the welcome! I'll let you know what I end up doing.... I'm leaning to FEC-T (right this minute hahaha - wait 2 secs and I'll have flipped back over to to AC-T). And I used to be so decisive........
Have a good day ladies xx0 -
Joinsing: Interesting your onc's take on those studies. I too learned that this is as much an art as a science. All we can do is go on the best information we have at the time, and do what feels right for ourselves.
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Hi Suze35
Thanks for thinking of me. I am so sorry everyone for being away for so long and not telling you what was going on with me. I am absolutely fine and just finished radiation yesterday. I have kind of being in my own world, crying a lot, not sure why. Just wanted to get away from everything, also been working on my son's wedding in June and began to feel that I never went through this horrible experience. Even my family have begun to interact with me as if nothing ever happend. I swear, I am not sure which way I want to feel, so I took a long time off from the boards. I feel extremely guilty when I begin to act like my prior self and not come to the boards. But then when I go through my files and read reports, I hate it, I just can't handle it. This is going to be a long road to final emotional recoverey, I think. I feel I am really just very emotionally tired from all of this and just want to blank myself out. When I am going to come back to reality, I am not sure. But I promise to check in with you guys from time to time. Love you all and by best wishes to each and every one of you.
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Lovelyface: I was so happy to see you post and to hear you are finished with radiation. Allow yourself a very good cry, as I think it is so important to have some sort of release from all the trials of the last year! Big hugs and great to see you here!!!
Ladies, I have been doing much research and like to share my findings here with you. I have been suffering horribly from fibromyalgia and a very scary low body temp since all of my surgeries and this is a great article on this:
http://www.wellsphere.com/fibromyalgia-article/fibromyalgia-and-low-body-temperature/1295181
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Lovelyface - I am so glad to hear you are doing well physically, and this is a mental break you are taking. My therapist talks to me about the acute traumatic stress phase, and the post-traumatic stress phase that comes after treatment. It sounds like what you are going through is so very normal, and is a part of getting truly healthy. Most women find themselves drifting away from the boards once active treatment is over and the business of life moves back in. Please don't feel guilty for that! Check in when you are feeling like it, and enjoy your son's wedding!
MBJ - how low were your temps running? I've noticed mine a bit lower, in the 97.5 range, but don't have any fibromyalgia issues...that I know of. I'll check out the article, thanks!0 -
suze: At my lowest I am at 95.5! When it is this low, I can hardly walk and I am like a 90 year old woman! When my temp is at 98.6--I have zero pain, I am full of energy, my brain works fine and I can accomplish much. Taking 50 mg of pregnenolone is helping a bit, but the temp doesn't last. This article had some things you can do to help boost your temp permanently, and I think I may just try them as I am feeling a bit desperate right now. I know the low body temp and cancer are related and I feel if I can fix this one thing, maybe I will never have cancer again!
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MBJ - that was an interesting read! That stinks that your temp runs that low. I think I'm going to track mine for a bit and see, as I'm always chilled and am having some minor knee issues that I chalked up to chemo. I too am willing to try many different things to prevent this coming back, as long as it isn't too crazy. Diet, exercise, supplements addressing different issues...bring it on!
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This article is also related to low body temps but deals more with the insulin link which I think applies to us TN's:
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Suze: What I have been finding is that all disease in the body seems to corresponde to low body temp. I don't necessarily agree with the methods listed at the end of the article, however, I think it's important to fix it!
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Here is one more article on low body temp: http://www.mall-net.com/mcs/coldbody.html
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MBJ - Now that is right up my alley. My gut tells me insulin control is key for us...I hope so, because I'm doing everything I can to keep mine steady and balanced. My best friend's son has juvenile diabetes, and she has been able to cut his insulin needs in half with diet alone, so she's really helping me with mine. And it certainly makes sense about temperature. Dr. Block talks about blood viscosity in his book, and that is just one connection I can see, I'm sure there are plenty. TN cancers, like immune disorders, are so complex, that I think to just improve our chances, we have to look at the whole body and see what is going on. And sadly, even that isn't enough sometimes.
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Suze: I think it's all related! I am not willing to give up or give in to BC.
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joinsing, if it matters, I did Taxotere first, A/C second. And it was all prior to surgery (and I chose MX).
Hope you feel better, MBJ.
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riley: thank you--I am fine, just frustrated is all.
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hello ladies , hope your all doing well ,,, i just wanted to ask if i may .. has any one else got the sorest feet, burning and bruised , under my feet, i may sleep or sit ofr a while when i stand ouch so sore i feel like an old lady trying to find my balance the pain to go then im fine and sore legs ?
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Hi to everyone, saw the oncologist today, starting chemo in two weeks. Wouldn't give me all the information bacause i went to the appointment on my own. Have to go back monday with hubby. She did say that because i'm Bipolar i could enter severe manic states. Anybody have anymore info on this, please
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Angelice - I can't remember, are you on Taxol or Taxotere? While on Taxol, my feet became very sensitive, it seemed that my nerve endings were very angry. I only had a few pair of shoes that felt good and wore soft socks as well. It could be neuropathy........talk to your onc to see if he can give you something for the pain or make suggestions. I hope you feel better soon.
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Had my three month post chemo follow-up yesterday. So far so good. I may have a small tear in my deltoid muscle of my left arm. My brother asked me "aren't you worried you may have to have surgery to fix it"? I have been worried for weeks that my arm pain may be bone mets- so I said, "hey it's not cancer! I can handle a small surgery!
Best wishes to everyone just starting and those in the midst!!
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Angelice: Could be a couple things going on with the feet. Maybe it's not related to the chemo.. hard to tell really. Neuropathy can be characterized by numbness, tingling, pins and needles, so it could be that. But burning or bruising... sounds like it might be something else perhaps. I have had burning and bruising, but it wasn't from chemo. I have a neuroma in one foot and plantar fasciitis dx in both and wear orthotics. It was very painful when dx and took quite a while to fix. There are several things it could be.. might want to ask the doc about it.0
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Angelice: I developed something called plantar fascia after chemo in my right foot. So painful to walk! I think chemo destroys the collagen in the body (face included) and this could be the cause. I also had neuropathy but in my hands, not my feet. My Onc told me that any injury or pain prior to chemo gets magnified by chemo. I would tell your dr. so he can help you or send you to a specialist. I now have to wear orthotics in my shoes, too.
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hi ladies thanks for the replys. i saw my onc other day he mentioned about the orthotics , i wanted to ask if i was the only one feeling this, and if it was chemo related , the onc said it was not chemo related, although i spoke to a nurse when i was at rads , she said was chemo related nerve endings of the feet .. so im confused might try the orthotics
jenn i was on taxol till feb 4th now started rads
thanks again ladies
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IMO, most oncs will give you the "not chemo related" line unless it is a clearly documented SE. And even then there is disagreement and confusion. Just another annoying aspect of this roller-coaster ride.
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Met with my onc today and got the full path report. Not good. My breast tumor was 6.5 x 2 x 3 cm, I had 5 lymph nodes > 0.2 cm, extra nodal extension, and metastasis to the axilla tissue. This was after 5 months of chemo. I am going to get a PET on Monday, followed by rads. If my PET is clear, I will be doing a clinical study at Dana Farber, two arms - one is Avastin with metronomic chemo, the other is exercise/diet. If I get the exercise and diet arm, my mom offered to pay for my doctor to replicate the Avastin arm, which my doctor is willing to do, but I will cross that bridge down the road.
I'm not Stage IV yet. My doctor has a patient with my stats 5 years out. I am trying to have hope. I know I wont give up until the fat lady sings.
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Suze35, You are in my prayers... I love your attitude!!!
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