August 2010...anyone starting chemo besides me?!
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Lizzy: My thoughts and prayers are with you and your sister. I lost my first husband to a sudden heart attack, he was just 52, so I know what a shock and how horrible that is.
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Cal, I am a new member but I wanted you to know that I, too, went through this with my oncologist. Tamoxifin was a severe shock. He had me meet with an oncologicial psychiatrist who put me on an antidepressent, not for depression but for the menopausal/hormonal shock from Tamoxifin. I didn't know that so many women are put on antidepressents specifically for Tamoxifin shock. The choice of antidepressent was also tricky because some antidepressents interfere with the processing and absorption of Tamoxifin and its secondary products in the system. I was put on Venlafaxine XR (Generic for Effexor XR) and my SE's are 90% soothed. Another tidbit I wanted to relay has to do with the three genetic categories for processing and absorption of Tamoxifin. Some women process well, some (like me) process intermediately, and for some women it is really not worth taking at all, since their bodies simply don't process Tamoxifin. Has your oncologist tested you to see if you are a great or poor processor? It is a simple test. Would you consider a psychotropic solution to the Tamoxifin SE's? Let me know if you want more specific info. My oncologist is familiar with the latest research in many areas and has done some specirfic research into Tamoxifen processing, genetic testing for T processing and soothing Side Effects of Tamoxifin through methods that don't interfere with Tamoxifin processing.
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Lady (((( HUGS))))) sorry for such crappy news!!!
Lizzy(((( HUGS))))) sorry for your families loss!!!!
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Lizzy I am so sorry for you and your family. You have spoken of your BIL before and it sounded like he was a wonderful man.
Lady I hope you are doing ok today.
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Lizzy and Lady, how are you guys doing?0
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Lady Bama, I am so sad to hear of the diagnosis. On the bright side my best childhood friend had the same experience as you and because it was early she has had no further cancer. Still, this must leave you shaken I will pray for you.
Lizzy I am sorry for your loss. You will be a wonderful support for your sister.
16 out of 35 rads complete.
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Ginger - How is your numbness doing?0
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I have been having a new symptom since the Fl. trip. Found out at my appointment with onc. it has a name.... lhermitte's sign. Every time I bend my head down I get shock like feeling in my lower legs and feet. I have to have a mri next week to see what it causing it in my neck. Hopefully it is nothing....again. All these extra little things are getting old.
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I know how you feel Sue. I have started having lymphedema in my arm from the radiation. It really bummed me out when I first saw it. It felt like that last straw thing to my coping mechanisms. I got myself sorted out a bit now with the help of the LE specialist who made it seem doable to treat myself but now I have to wear a sleeve all day (just as soon as I get it). Makes me sad.0
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Hi guys-
Updating from the blackberry! Thank u all for your well wishes.
I will post more later-0 -
Omaz: How did you know about the lymphedema? Did you notice it right away and was it a dramatic change or more subtle. I had the axilla radiated and I am absolutely terrified of developing lymphedema, especially now with the exercising. Maybe if you could tell me your symptoms, and how noticeable they were or were not, I could relax a little.
Thanks, Debbi
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sptmm - When I hold my arms out extended to the side at shoulder level my affected upper arm has a hanging down part and my other one really doesn't. It's in the triceps area. When it first started it was after I lifted some free weights last week and actually my whole arm was achy so I asked the nurse and she looked at the inner part of my elbow and thought she could see the LE there. She sent me to the LE specialist. It's mild stage 1, so we caught it early for which I am thankful. So if one arm seems bigger than the other that was the sign for me and mine started in the upper arm back side area. Oh yeah - they said it wasn't from the weights it was from the rads, the weight thing was considered coincidence (actually a lucky one I guess). Hope that helps!0
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Thanks Omaz. I have had pain in my inner elbow on that side since rads began. I attributed it to having to put my arm up in that position for a long period of time, but it has been a month and a half and it still hurts. I will check for swelling. I have been considering just making an appointment to see the lymphedema therapist just to check as I don't need referrals with my insurance.
Debbi
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sptmm - From what the LE therapist said I would. It seems we are always at risk for it now, even with 2 nodes removed. They can tell you what to look for and they will probably measure you arm their special way and compare it to the other arm.0
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Good evening chemosabes and radicals-
The services for my BIL were very well done and, overall, it was about as good as could be expected. My heart breaks for my sister, however.
Some inspirational news for all of us: my sister's SIL is a 6 yr bc survivor! She had a lumpectomy, no chemo, just radiation and she is doing very well. She was a Stage I so her story is a bit different than some of our's but nonetheless she is doing well. She also had the oncatype-dx testing and she came back low so she felt comfortable foregoing chemo. Has anyone else had oncatype testing? I would be curious to know where I stand on that.
Iowa: that sounds like quite an issue you are confronted with. I sure hope there is an easy fix because, and as you pointed out, all these little issues are tiresome. Hopefully it is something a chiropractor can fix. It does sound nerve-related. I wish you the best with that. Keep us posted.
Omaz: that is a shame about the LE. Nothing good about that news. How did you see it? Was your arm swelling? I just recently found out that rads can cause LE. I am not going to be able to get rads, even though I should, because of this infection and I am not too worried about it now. How is the sleeve working for you? What exactly does it do? I wish you well with this latest challenge.
Calamtykel: I meant to tell you were are the same age. I will be 41 in March. We are both premenopausal. I get my tamoxifen rx on the 23rd. I am really hoping I don't have trouble with it. My sister's SIL who had bc just finished 5 years on tamox and is now on Femara. She was not bothered by tamoxifen but there are a lot of women who have problems with it. In any case, I hope you are doing ok these days and working on an alternative to tamoxifen.
Texas: where are you? We miss you. Hope you are well.
Sptmm: I know we are at *risk* for LE after having nodes removed but what gets it started? I mean has anyone pinpointed what we might do to inadvertently trigger it? I bet "they" don't know what we could do to trigger it but it sure would be nice to know. Like eat more Vitamin C and don't sprint or something, you know? We are just given these scary scenarios and not told how/if we can do anything to help ourselves avoid them. To me, after all these years and C research, that is a bummer. When I talked to the onc peeps about getting a tattoo on the left arm about no bp/blood draws they reminded me I cannot get a tattoo b/c of the needles involved (I don't have one and never considered that aspect) and furthermore if I am rushed into a hospital (I was worried about the ER using that arm if I was rushed in after an accident, for instance) they will do whatever to keep me alive. I don't agree with that line of thinking. I don't agree that they should just stab up my arm and cause me LE but hey, I will still be alive. There should be easier ways to avoid inadvertent emergency use of our affected arms. I swear, one of these days next to those store cards on our key rings is going to be a medical fob. It has got to happen.
Sweeney: how are you? Getting energy back after your first few weeks on the job? I hope you are doing well. Keep us posted.
Something strange: since I had chemo, when I turn my head from left to right, I can hear the sounds of my neck, as I move my head. It is like suddenly I am eligible to hear the sounds inside my body when I turn my head.....it is so very weird. I am not bringing this up with my docs as I will be living at the hospital, being studied, along with the other animals!
This was a long 3 days and I am very tired. I will be going to bed for long winter's rest tonight. I really feel bad for my sister and, in the end, it appears to have been a blood clot that caused the heart attack. A terrible shame at that.
I thank you all, again, for your well-wishes and concern. It was very nice to have such support at such an awful time.
I hope you all are having a lovely night-
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Texas drop us a hello or a howdy doo, we just want to say hi and hear how you are doing. Hugs Ginger
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Lizzy: You are right and that is the problem. I can't seem to get a straight answer from any of my doctors about exactly what I could do to trigger the lymphedema. It is like living with a ticking time bomb. Bad enough this cancer could decide to return at a moments notice ten years down the road without any rhyme or reason, but we also have to worry about lymphedema! I am a very logical person and all this "we just don't know" drive me NUTS! Funny you mention your neck, my neck seems to crack a lot more now than it ever did before, really weird.
Sue: Right after my chemo I had the sensation of "fireworks going off" periodically in the tops of my feet. It was a sudden burst of tingling feeling that spread across the top of my foot. I associated it to the neuropathy and never mentioned it to the doctors. It was a really weird feeling, but is has gone away now.
Lady: How are you?
Texas: As always, thinking of you. Hope you are recovering quickly!
I hope everyone is enjoying their day.
Debbi
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Ginger- HOWDY! lol
Sorry i had been feeling so good since my BMX that afte the 1st week being laid up in bed i have been out and bout showing my aunt all there is in my little corner of TX!
BTW- It got freakishly COLD! It snowed in San Antonio the day after I left! We only got ice everywhere here. Its funny cuz they cancelled school on fri the 4th i think due to it being too cold LOL- i had to walk to the school in the snow when i was growing up LOL (not far tho) It has been warming up for a few days, then dropping back below freezing, then warming up, last nights low was 29 and tonight its supposed to be 25! Who the heck stole my sun!
I am doing surprsingly well- even shocked my surgeon when i did the 1st follow up to have one of the drains removed...
Thats how I roll LOL- you know nothing is gonna keep me down!
Lady- I am sorry to hear of your new dx, finding it early is great, but just finding more cancer is awful! You know we are all here for you as you journey into yet another fight against cancer!
Lizzy- Sorry to hear of your BIL's death.
Missed everyone!!!!
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Hi Texas - Great to hear your voice! So glad you are doing well!!0
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Howdee Texas! good to hear you are doing so well.
Ginger
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Lymphedema - From the book Lymphedema - A breast cancer patient's guide to prevention and healing
These are the section headings in the 'What can I do to prevent lymphedema' Chapter:
Avoid infection and injury
Avoid pressure on the arm
Avoid constrictive clothing
Avoid vigorous activity
Be careful when shaving
Avoid heat (hot tubs, sauna)
Take care of skin
Maintain ideal weight
Avoid extended diuretics
Exercise regularly but don't overdo it
Choose a light prosthesis
Plan ahead when you travel
Eat healthful foods
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Omaz - thanks for the lymphedema list. I finally got to see a PT who specialized in LE. She said that a high BMI, infection and injury are the 3 things that are related to getting LE. While I lost 40 lbs last year I still am considered obese so have to work on getting my BMI lower. I don't have LE but do have pain in upper arms and chest at night so am going to do PT for awhile.
Lizzy sorry to hear about your BIL.
Texas - great to hear you are better after your surgery
Lady - sorry to hear about your new DX. When they told me I had a 30% chance of having uterine/ovarian cancer I was scared the path report would come back positive for something but relieved it did not. I hope they got it all and you don't need any further tx.
I am waiting for cataract surgery - hoping not to get sick and have it cancelled.
I preregistered and all for the LE PT but when I got to my first appt. they tell me they don't take my insurance and want me to sign that I would pay whatever my ins didn't. Well after traveling 35 miles in bad weather to be there plus all the hassell and wait i went thru for the appt. i signed. I found out the next day the insurance won't pay any of it because i have to pay my 250 deductible and the bill was for 240. However my insurance negotiated with them and now they will accept and i just have to pay my 20 copay for future appts. It would have been nice if they had told me when i preregistered that they didn't take my insurance and maybe i could have got the negotiations started before hand. Maybe ambushing me at the 1st appt was the plan?????? Moral - always ASK if they take your insurance and don't assume they do just because they don't say anything at preregistration!
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Texas glad to hear you are out and about. Will you be joining us for rads?
All Isn't it amazing how these "young" bodies like Texas, rebound? HMMM.libraylil
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I forgot to add radiation treatment to the list of LE risks!0
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Lady - I'm so sorry about your diagnosis! But I had to chime in - my aunt had ovarian cancer, early stage 12 years ago and she is alive and well today. You are most definintely in my prayers! And the fact that they have found it early is a very good thing - it wasn't even large enough to be scanned it sounds like.
Well, as the tamox has cleared from my body, I've stopped the shaking and my head has been clearer - I've been able to function. Still having anxiety but not the brain fog and dizziness that I had on the tamox, and am having better days. Not so sure the lexapro is working because I've started crying now. I think maybe that's a good thing? I wanted to cry for so long and just couldn't but now I just burst into tears and it makes me feel better. Not sure if this is the lexapro working in an adverse direction (as it can) or if it's just moving through the process and getting on with my life.
Had a great morning at church and going to bake some granola in my brand new oven! Did I mention that the old one "died" --or rather it turned on and wouldn't turn off! =:O So along with the thousands that we owe...we had to buy a new one. At least it's nice and clean!
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Good morning ladies, I hope everyone is enjoying their Sunday. I have been trying to get over a cold for what feels like forever now and finally this morning, for the first time in over a week, my throat is not hurting when I swallow. Hooray! Also on Friday I got a call from the rad onc and I have an appt for my initial consult on 2/22. Since I had a lumpectomy I am quite sure that rads will be recommended and I'm ready to get that going.
Lizzy About the oncotype dx testing, my onc said that it is only researched and used in women who are node-negative, since the standard is to just go ahead and give chemo if you are node positive. So that is why my onc said I did not need to have it and probably why your onc didn't recommend it either.
Texas Welcome back and I'm so glad to hear you are doing so well after your MX. You are always so full of energy I am not surprised that you are recovering so quickly!
Omaz, zenith, and sptmm I am sorry you are all having trouble with LE but hopefully with good treatment it won't be too much of a problem for any of you.
Lady I hope you are doing well, I've been thinking about you.
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Hello all! So sorry to be gone so long. My sweet husband decided to try to get the audio on our laptop working and checking the troubleshooting website. He "flashed the bios" (whatever in the world that means) and killed our computer. I have been without one for almost two weeks and have been going into severe detox from this board. He somehow got it hooked up for me to read the boards last weekend through his playstation but I couldn't post. Glad to be among all of you again.
Lady - My thoughts are with you and I am so happy that they found it so early. The fact the doctor thought they looked normal is good too. I know how scary it is and I want you to know you are in my prayers.
Lizzy - So sorry about your loss. I hope the family is dealing with everything as well as can be expected. My heart is sad for you all...especially your sister.
Sue - Please let us know what you find out. Thoughts and prayers coming your way for something like a pinched nerve!
Sorry to hear so many are having problems with LE. It doesn't seem fair to go through so much only to have more to deal with.
Cal - Glad to hear that you are coming out of Tamox fog and feeling a little better. Sorry about your oven too...I know what you mean about the money, wasn't expecting to have to buy a new computer.
Texas - Been thinking about you and hoping recovery is going well. I guess if you are running all over town, you must have pulled through with flying colors!
Blessings out to everyone. So nice to be back here. It is hard. I really realized how much I rely on you ladies! Thank you for being there for me! Have a very happy Valentine's day!
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Welcome back mommichelle! I remember flashing from the 70's, but I think that was a different thing!!!0
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Happy Valentine's Day everybody
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Happy Valentine's Day Lady!
How are you doing?
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