Calling all TNs
Comments
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All this talk about Metformin. I don't know. I think I am going to let well enough alone. Don't want to tax my liver any more than necessary. An absence of SEs doesn't necessarily mean it isn't having an impact on your liver, not to mention the possibility of GI upset. Sorry, I know I am being a poopy-head, peeing on the parade and all.
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No poopy head for you Heidi...the er positives take Tamoxifin and there are plenty of se's with that also...My SIL took it for awhile and just couldn't stand it...too many se's for her...
I dunno..I think I would like to just try it...and see...if the se's were too much I would probably quit it....I want to LIVE while I'm alive...you know what I mean??
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I have not really posted on this site before, but I could sure use someone to talk with tonight. I am almost a year out of chemo (March 10th was last treatment), and finished radiation in May. When I first started radiation I had upper and mid back pains which I attributed to laying on that god-awful table. Even though the Rad said it was very unlikely to have a recurrence during radiation, I had a bone scan which came back clear. The pains went away for awhile, but recurred in January. I had an MRI, and the Dr. said no recurrence, but that I had some (and he later said severe) arthritis in my back. I have never had arthritis anywhere in my body. Every time this pain comes I am paralyzed with fear of recurrence. I should also mention that I travel for work, and am constantly lugging a suitcase and computer case around, so this could well be the case for the back pain. That and being on a plane every week and in a different hotel/type of bed every week. My Onc. is the super realistic straightforward glass half empty person. For example, she said she typically doesn't do blood screens on three month follow-up visit because "if it turns out positive it's then terminal and knowing earlier won't affect the survival time." So I am scared of knowing and equally scared of not knowing. Have any of you been there? I am so not ready to face the idea of recurrence or mets, because on my up days I want to believe I have beat this. I find that I can't move forward, and can't stop thinking about the what ifs, but at the same time if it is bad I am not ready to handle it. I can't really talk to family or friends or especially kids, because they want to believe it's all behind me - and I kind of want them to keep thinking this. Thank you for listening. It's hard being alone in a hotel room 3,000 miles from home without anyone to talk to, when I can't turn off my brain from going to dark places
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Aimee- Many in here have been where you are now. They will soon be along to give you more guidance and reassurance (I don't post that much "serious" stuff anymore).
I will say that, although difficult, you will learn how to manage your fears and get your life back to some semblance of normalcy.
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Aimee - I'm sorry you have such worry, and are away from home and your comforts. I think some stage IV ladies are going to disagree with your onco. I know it's hard not to borrow trouble, a week ago I was scouring the boards for bone met info! Had a bone scan - it came back clean.
Maybe a gentle stretching routine in the morning, hot bath at night will help relax your muscles?
Wishing you peaceful sleep, that restores your body. Karen0 -
Aimee - I have sent you a PM. My Onc. had said the same thing to me, which I was so shocked to hear. I am also having a neck and back pain right now. Our diagnosis and timing seems to be similar as well. I am sorry you are feeling lonely with all these thoughts in a hotel room so far away.
Karen - So happy to hear you had a clean bone scan, yeah! I wonder how did you handle the waiting for results period. I go out of my mind!.
When your doctors say such hopless things, how can a patient ever heal or move forward with their lives, even if it is a short one.
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Aimee,
I look forward to hopefully hearing from some further along in this journey than us, as I was just diagnosed 2/11 and you just a few months before me. All I can say is that you are not alone in your thinking - I understand so well the fear of not knowing and the fear of knowing. I am a basket case when scans come along.
I believe chemo might aggravate tendencies toward arthritis. I hobble around like an ancient person when I first get up. Once I get moving around I'm ok, but I still feel much stiffer than before cancer. Some people here have told me it is from chemo and can take a year or more to go away.
Almost 30 years ago, I quit drinking. I was told to live one day at a time. I was also told that no one could live more than one day at a time even though we try by "projecting" into the future all the time. It was good advice and it helped me through some really tough times. I've started to use this tool again with some success with this fear of recurrence. All I can do is live this one day, hour by hour, the best I know how to do. Anyway, I hope this helps - and believe me, I don't profess to have the answers to totally conquering these fears, but going back to some of these simple practices that helped me so many years ago has helped me once again. Hope you stay in touch with us on this site!
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Thank you everyone for your kind thoughts. I am looking out from my hotel room in Virgina Beach at a beautiful sunrise (I live outside Seattle and am more used to sunsets). I will take your advice Christina and just focus on this day. When I feel the lowest is when I think about my kids and possibly missing their futures. I have a daughter just about to get engaged, and a son who is a few years behind her in that goal. I use the idea of wedding planning to take my mind off cancer, but then I worry if I will be there for the wedding, grandchildren etc. I'm sure most everyone on this site has similar thoughts.
Today I will be grateful for today and all the days before it, and try not to worry about tomorrow
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AimeeMac, Welcome. I understand and have shared your fears. I had back pains for three months before I could face a bone scan because I was so scared of the results.The bone scan showed only arthritis.
If your scan showed arthritis in January, the arthritis is not going to go away. This is one of those "horse or zebra" questions. You hear the clip clop coming down the path, and you are thinking zebra when logically its likely to be a horse. Our fears can grow very large. You know you have arthritis.
Like Christina said, live a day at a time, and enjoy that sunrise. Post again when you feel like it, or have questions or fears.
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Ladies:
An update, I am starting to have hotflashes again. I do have my cycle back but it's not regular. So I am hoping and thinking maybe it's my cycle taking a break and the hotflashes return for SPRING/SUMMER.
Oh the joys....
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Yup - what mity said - only she said it better than I ever could.
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Suze & MBJ - I am thinking about you both this morning. I am wondering how you are doing? Please write if you feel up to it. Suze, are you going to do any more treatments? MBJ - how is your strength building up? Are you able to type?
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Heidi- you *are* a poopy-head. Glad you finally recognize that!
Hi everyone! Hope you all have a great day!
xxoo
edited to add- regarding arthritis: never had it before, have it now. post-recon (and chemo). If you think abt it, our bodies are subjected to so much to fight bc. Including toxic chemicals and surgeries that completely mess with proper joint alignment. It is no wonder that all of us aren't bed-ridden!! With that said, I got bone scans as well when the pain popped up. my motto- "Trust, then verify"
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Hi everyone- Went for my abdominal US and ALL IS CLEAR!!!! Not even fatty liver! Nothing. What a relief.So 1 down. Next wednesday left breast US.
Have a great day!
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Aimeemac, you should find yourself lucky to see your children all grown up. I have two little girls 9 and 6 yrs old, I know I'm gonna beat this, but I have fears of recurrence and not being able to see them grow up as much as your children are, so count your blessings and enjoy the now.
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Babs37 - Wonderful news! I'm sure you'll have a repeat next week. Hang in there.
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Congratulations Babs! Whew! What a relief! Good Luck next week as well. I am sure it will be all fine. Not even fatty liver? That is excellent.
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Okay now I am having a neck pain, of course I might have mentioned before, as it has been there since September. My Cervical Spine MRI is all clear except for some dessication and stuff, although not on the right, but left. The neck pain is on the right. Now I am getting worried. I have been massaging, heat and cold therapy. Except for the pain gone from the back side of the neck, now the pain seems to be localized in one spot only. The pain is very sharp when touched and is not lessening, no, not at all. Should I be very concerned now? Onc. asked me when my last petscan was. I told him August, 2011. In Sept. the pain started. He said if it was cancer, we would have seen it on the petscan in August. Seemed like a good explanation to me. I am so freaking out nowadays, since this neck pain seems to be connected to a mild back pain as well.
Michelle - Yes, when you mentioned arthritis, I swear our bodies have taken so much crap. On my cervical MRI, it does not say arthritis anywhere, however, there is other things they say which has deteriorated since the last exam.
As long as it is not cancer, I can take this neck pain for life, I swear. I can take it in its place. I just want confirmation that it is not that. I guess here we go again, another scan and alarm.
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Congrats Babs!!
Lovelyface, hang in there, I'm sure you will figure out what is causing the neck pain and it WON'T be from FC!!! What about gentle neck streching exercises?
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Babs, So happy for you!
Lovelyface, Have you tried a really good physical therapist? I go to one who has a doctorate in physical therapy and he is fantastic. He has really helped me a lot in the past.
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christina - thanks - yes, I did try a PT for at least 6 sessions but did not feel anything was improving. I was really stressed out by the time I reached my office after PT, due to traffic and the time off from work. So, I had to just stop going. At least if I can find out from the Ortho what in my MRI suggests this pain, then I can go from there, maybe try chriopractor or PT again. I will try another therapist this time, maybe late in the afternoons.
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Got my Metfomin today. She wrote 500mg 2 times a day! I think I will start with 250 2 times a day until my body gets used to it. The nurse told me to make sure I am on Birth Control because they have had patients get pregnant, one with twins even though they told her she was in menapause. Which I got the call yesterday that I am in menopause. I have my tubes tied, but I would greatly welcome a new little one or two
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I got the go ahead to do the metformin trial if I want so I am going to read up on the metformin stuff this weekend. My gyn was very interested that they were looking at metformin for prevention of recurrence. I finally went for my exam 4 years late! I also have surgery tentatively scheduled with the PS for placement of a tissue expander in early June.
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WooHoo Babs!!
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Well..Babs..sounds like a glass of wine is in order...GOOD STUFF!
RE: neck pain..this must be going around cause I have it too..had it last winter also..onc said it was arthritis...I did put some ice on it..took some aspirin and that helped alot...had alot of pain Monday but much better now...I hate to say this but I think it was sitting at the freaking slot machine for way too long on Friday night...
The 2 week rule is a good thing...I was freaking earlier this week but feel so much better now...I need to have better posture...not getting any younger...plus lots of stress lately..but working on that...coming up on 3 years is stressfull as h**ll...I'm freaking about everything!
Do some of you remember JustPayton (Sam)? I miss her so much...she loved college basketball and with March Madness coming up soon..well..I just miss her..anyone want to talk sport with me???
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good evening ladies,
well, i have my 6 week follow-up appointment on friday with dr k. i am a little worried. about 3 weeks ago i woke up to a rash on my left chest (BMX july of 2011) saw the doc and he thought it was shingles. i was happy to hear that and took the antibiotics. the rash is still there and the last week i feel "thick" on my left side. my ribs feel more pronounced, if that is even possible. anyway, i have been slowly freaking myself out. i know better and should just take one deep breath, over and over, until friday, but with my history i can't help but think i am headed towards stage IV.
the up side to all this freaking out is i weeded my entire yard today to take my mind off of it. still stressed but with a freshly coifed yard. gotta look at the upside.
thanks for letting me rant!
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inmate, what time is your appt on Friday? I will be at rads at 10:15. I wonder if you are still having issues from rads. The first time I went through radiation in 2003 I had rib pain and soreness for a long time, I mean like a year! It felt different to touch than my none radiated side, so I hope that is all it is. I certainly understand the fear, though.
Babs-Yayyyyyy!
Hi Aimee! I met you on another thread a while back. It's gotta be your arthritis
My husband came into the house yesterday with a strange look on his face holding a letter, then tosses it to me. It was from the mammo clinic saying it was time for my mammo! Well, I don't have any boobs anymore!!! He started to laugh, and I did not know if I should laugh or cry, so I started laughing hysterically! I should probably call them to let them know I do not need their services anymore. If I did, I would now go to my cancer center for all tests.
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MacFry is just taking time out of his busy day to stop in and say hello....0
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Trying to get on metformin has been like trying to move a mountain. I can get in a study at Dana Farber but they want me to change my onc and radiation onc to them....and I finally liek the one's I have. Going to my PCP with some studies in hopes she will put me on..I could stand to lose a few pounds if it has had that effect on anyone.
The big C sucks. My cousin (55) and a nutritionist jsut got diagnosed with brain cancer and my neigbor has lung and bone mets from uterine cnacer 5 years ago....doing yoga 2 times a week...one of them is saurvoopa yoga...I lvoe it...bliss inside and out.
Hope everyone is doing OK.
Suze if you are lurking I hope you are not in too much pain, hell, not in any pain.
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Bak.....i hope that is all it is. i finished rads march of last year. still doesn't explain the rash but hey, i would be so happy with shingles. how are you doing? looking forward to our get together. just let me know when you have a break in studies.
heidi......or should i say macfry? thanks!
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