Calling all TNs
Comments
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Goldie- The side effects are different for everyone but for me they were loss of hair, peeling hands and feet with some neuropathy but not to bad, nassau but my meds kept that in check, drop in white blood count, changes in sense of taste and smell, eveythng tasted like cardboard or metalic. There was also extreme fatigue and I slept a lot.
Edited to add: severe bone pain from neaulasta shot. No one told me about the claritin so I just sufferd through it. Had good pain mecs that helped some.0 -
Goldie I only did 4 rounds of the Taxotere and with the shortness of breath and rapid heart rate I will only do it again if I have too. If given the choice right now I am not sure I would have done the other two but with that being said I can't say for sure because my MO only said 4. I guess one way to look at it is that if you only four you will have two to fall back on. I am not sure if there is a cut off though with the Taxotere. I know they just keep using Cytoxan. I never heard of it causing hearing issues. Best of luck
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Worrywort93 I think that if you have done it all along you should be fine, as I think that the main side-effects that are immediate are from the steroids and if you are used to those you will be ok. I did get sick the next day and the few following. I also got the Neulasta with the Adrymicin too though so there were a lot of drugs involved.
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I am trying again...............I go tomorrow to meet with the RO are there anythings that I need to ask about that might not pop up until later. Anything you can tell would be appreciated.
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A little Ray of hope. I am meeting with a researcher Monday to give permission to have my tumor tested for a certain protein. If I have it, I can get into a immunotherapy trial, that is just a couple of hours away!
Here's a little bit about it...
http://www.huffingtonpost.com/2013/05/16/mpdl3280a-immunotherapy-drug-cancer_n_3281876.html0 -
Hi Stupidboob,
I didn't have radiation but am wondering if there is a list of questions on the Rads Forum. I am like you and want to be well armed for all my appointments. Best of luck in getting some information for tomorrow.
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Karen that is great news...............please keep us updated and just know that all you do for yourself you do for us all.
Jcolford I am going to look now...............DUH....I should have done that...........:)
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Karen, that is wonderful! I am sending prayers that you qualify for the trial, and that miraculous things happen.
Carol
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Karen - I'm not used to praying for a test to be "positive".......but I will be praying hard that you are.
Stupidboob - I really can't think of any questions you need to ask your RO. Treatment is pretty standard and cut and dried. Everything you need to know should be explained to you at your first appointment.0 -
ok, now I remember why I did not go to the radiation forum. They scare me to the point of not wanting to do radiation. PLEASE just give me any advice you think I need..........if I stay over on the forum the only thing I am going to do is cancel the appointment.
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Thanks ladies!
Stupidboobs - wear warm socks and pants. Stay well lubed, sleep when you need to and drink carnation instant breakfast (cost less than boost) when you don't feel like eating. Rest and good nutrition are your only tools. You've got this!0 -
Stupidboob, ask your RO flat-out what damage to expect to your internal organs (heart, lungs) from the treatments. Mine said there would be some scarring at the very top of my right lung, but that it shouldn't even be noticeable functionally to me. I asked about my heart, and he said he would keep the beam a 'zipcode' away from my heart.
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Karen - Bless that ray of hope! I hope you realize how many sisters you have who are all pulling for you. Holding you in my heart.
We live on the edge of the Sierra Nevada mountains. The air is smokey and hot. Helicopters are hovering nearby with that scarey whoopa- whoopa sound. When I hear that sound I mentally recount what I need to grab if we need to evacuate. Such is life in paradise!
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Stupidboob, I don't know if this helps but I met with my RO last week & some of the things I asked were what areas were going to be radiated and why, the short & long term side effects, what supplements I could take and what products I could use on my skin. I should start sometime next month as I still have 2 taxol tx left (next one tomorrow). I'm really scared... she said a major risk is LE & problems w/ reconstruction.
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Oh Jan - how awful. Impending doom is such a stressful place. I hope you can stay safe and at home. Wish I could send you some of this NC rain. I usually suggest an Ativan washed down with a nice Merlot - but that may contribute to rescuing the ugly vase from Aunt Pat and leaving behind the photo albums. Keep us posted - wave to us if you make the evening news!
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Hello Ladies- I wanted to let you all know our Sister Warrior Dawn (Inmate) is in hospice.. learned of this yesterday from her sister.. My heart is so heavy..
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My heart is breaking for Dawn and her loved ones. She was such a spirited member of this thread when I first joined. I pray for a peaceful passing and comfort for her family.
Jan
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Prayers for Dawn and her family!
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Hey Inmate..love you lady....you are an integral part of this thread....hoping that hospice will keep you comfortable...you have seriously fought this crap with everything you have in you....and I'm still hoping for you....
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graceforme what is LE? Thank you for the info.
I am so sorry to hear this about inmate...........I thought she would kick its butt
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Stupidboob, it's lymphedema.
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Grace, I had 32 rounds of rads, I have some major issues with LE of my cancer boob, my left side and upper R back (Truncal) I had a segmented MX on my right side. I will take the SE's to have the radiation bombers kill whatever is left. It is painful, but I will say the cool of swimming and/or ice accompanied with my flexitouch and manual massage keeps me going.
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I'm new here but I'm so sad to hear about inmate. I am really struggling to get through this physically & emotionally & hearing this is so hard. I pray God's peace over all of us.
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Lory, I'm thinking just like you....I have to do this because I want to do all I can. I have two little boys who need me.
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stupidboob---I got Le from rads...you had several lymph nodes out so I would ask about a compression sleeve to wear during your treatments. My PT is LE certified and fitted me for a proper one. Not everyone gets it from rads but at least be alert to the precautions and early signs.
Inmate---all our love
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Dear sweet and powerful Inmate....... I am deeply saddened. Thank you for your strong and encouraging advise over the past year. Your wisdom and support helped many (like me) through the tough days starting with dx. Through the fear, pain, lows and unknown futures, you made us laugh and feel "cared" for. You will always hold a special place in my heart, and I will forever be grateful to have your help through the most difficult time of my life. Love to you our lovely sister.......xoxoxoxo
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Graceforme- Just wanted to say hi and welcome to the board. How old are your boys?
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Sweetpickle, my boys are 7 & 4. I'm so scared & having a very hard time. I can't sleep w/o a sleeping pill & have to take Xanax & right now I just can't stop crying. I'm tired of pretending I'm ok.
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Stupidboob – you can Google “questions to ask a radiation oncologist”, but in my experience, the RO anticipated questions and was very thorough in his explanation of the procedure and potential side effects. I virtually had NO side effects – none of the increasing fatigue that he mentioned might happen, nor anything else that you may have read about. Towards the very end I had VERY MILD ‘sunburn’, but that’s about it. This was NOT a scary nor difficult procedure for me. (Hardest part was finding a parking spot in the crowded hospital parking deck!) Since your affected side is the left (same side as the heart), you may want to ask if they do the treatment in the prone position, rather than lying on your back. This minimizes exposure to the heart, but not all places have this option. If they don’t /can’t do it this way, you may want to ask if this is offered anywhere else nearby. Good luck to you.
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Sending hugs to our gal Inmate.
Didn't read up yet on the research study that you posted, OBXK, But sure hope you get in it.
I Hate BC....A friend of my mother has been dx and had UMX today This dear lady is 89 years old!
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