ATEMPT Clinical Trial - Roll Call
Comments
-
Laura glad it went well!
Had my simulation today and start rads a week from Mon. 4 days off for Tgiving! Woohoo
0 -
Thanks to all of you who reached out to speak with me about the trial and my apologies to anyone I wasn't able to get back to. I decided a week ago Friday to do the trial, finished the final testing yesterday morning, and got a call in the afternoon that I'd been randomized to TDM1. I start on Tuesday! I'm looking forward to moving ahead with this next LONG part of my treatment, but scared at the same time. So many unknowns as I begin!
Thank you so much for sharing your experiences with me personally. It was extraordinarily helpful.I'll try to post regularly with how it's going, and I'm very grateful to have found this group of BC sisters!
0 -
Serenitysis... look forward to your posts. Maggie
0 -
Good choice Serenitysis. Keep us posted and good luck
0 -
Hey Tiny Dancer! I read w interest that you got three freckle sized tattoos for your positioning. I got big Sharpie lines w clear film on them. I longed for the tattoos because I couldn't soak in the bathtub because the film would come loose.
It was time consuming to show up for rads every weekday, and I was surprised to have a few tears in my eyes the last day. Maybe it was the commitment of my treatment to these people and I felt safe. But never pain and only once were they late to get started.
I was prescribed a tub of steroid cream and it helped when treatment ended. I had two dime-sized areas where the skin peeled a little, and now my "tan" is disappearing unevenly. No more tenderness, and I quit worrying about shaving my underarms. Now that's a real change! Maybe I'll start again this summer...
Just started extemestane AI and am relieved they are tiny. I'm a little warmer and my joints hurt a little, but it could be from walking some strong dogs as a pet sitter.
Serenitysis, congratulations on getting the TDM1 arm of the trial. It's a top-of- the-line treatment that is well-regarded by my MO. He nearly danced a jig when I got selected! Maggie, I haven't looked at the discussion much this month, but I hope you still play a big part. You've helped so many by starting this conversation.
And Isabel/Archer, I love your philosophies about living through this experience. I have good days and bad, but now I gladly embrace the "now-ness" of each moment as much as possible. I would never pick having any disease, but I'm grateful for every kindness offered to me this year.
0 -
HI Ozoner, during mapping, I was marked up with sharpie lines and when I was positioned just right, he tattooed three freckled sized dots. He said the sharpie lines wear off and it is very time consuming for them and the patient if they had to redo the process again. I don't see them so I don't mind. These people are doing their very best to make you feel safe, comfortable and relaxed during this phase of treatment. I will have the same reaction on my last day of rads too. Happy that this part is over, yet a bit sad that I won't see these wonderfully people anymore. Tomorrow is my first rad treatment and I will let you know how it went. Tuesday is my follow up Echo and Thursday will be my #5 TDM1 treatment and I feel fine.
Serenitysis, congratulations on being chosen for TDM1. Good Luck
0 -
TinyDancer I got my tattoos Fri and have my first treatment a week from tomorrow. Also have 5th tdm1 same day. Hope all goes well for you
0 -
Wabals, hope all goes well for you too!
0 -
Serenitysis--That's fantastic news! Starting treatment is indeed scary, but you will get in the groove of it. I hope you have a family member or friend to go to DF with you on treatment days. This was enormously helpful to me. Let us know how things go.
Ozoner-- I hope your good days will soon outweigh the bad by a hefty margin. It does get better and better in terms of one's daily consciousness.
To everyone else in the thick of things, treatment-wise, my continuing best wishes.
0 -
Thanks TinyD!
0 -
I echo was Isabel said about bringing someone with you. In fact, I think I'm slightly impaired afterwards (like I've had a drink or two) and don't think I should be driving, even though the nurses say that most people can. Does anyone else experience this? I drove myself once and had to be super careful driving home - won't do that again!
0 -
Thanks everyone for your good wishes and advice. My husband and sister are both going with me tomorrow, and several friends have also said they'd go with me in the future. Certainly plenty of chemo appointments for each of them to have the opportunity! I enjoy the meditation app "Calm." Think I'll be doing that this evening to try to relax before tomorrow.
0 -
Serenitysis I usually go alone to chemo. People are surprised but I am able to drive back and forth (1 1/2 hrs. each way) without problem. I enjoy the quiet time and so even my husband is not allowed. This is just to let you know that you will feel fine.
0 -
I had no trouble driving home (3 hrs) after treatment, but I felt vulnerable every time I walked into Dana Farber and was grateful for the company of friends and family. It was more emotional support than anything. Also someone to run down to the cafeteria and get me a cheese danish. ;-) But we are all proof that every woman approaches this differently, with different needs.
0 -
So true Isabel. Johns Hopkins is very familiar to me because my husband survived stage 4 cancer under their care. I know many people there as we went there once a week for a year for his chemo followed by 3 hospitalizations. I practically lived there for 2 years so I do not get that awful feeling. Another reason I do not take him..... He has had his share of trips there!
0 -
Wabals--Wow, your family has been through the cancer wringer already. I understand why you don't bring your husband to your treatments! My feelings about Dana Farber are extremely positive--the remarkable thing about it (and maybe all great hospitals dedicated to cancer) is that it's a very optimistic, cheerful place. Best decision i ever made was to shlep there for treatments. That said, every three weeks you walk through those doors and your mind fills with the thought, "Oh crap, I have cancer."
0 -
Monday was my simulation and yesterday was my first day of rads.Today was my second and both days were very quick. They told me to use Calendula Cream and not Aquafor because it was too greasy. They also told me that I didn't need Tom's of Maine deodorent without aluminum either, any kind will do.
0 -
I totally understand IsabelArcher. The first thing my friends say to me is "after all you and Rick went thru...seriously? You have cancer?" But like the NP at Hopkins who knows him said, "you know this is not anything like your husband had" and she is right. He was given 20% chance of chemo working at JHH, after a year of chemo at our local onc and open and close surgery. And we won the lottery. That is why I guess this doesn't scare me too much.
0 -
Hi there. Just wanted to give a radiation update for those of you who are on my radiation heels... Yesterday was my halfway mark (10 or 20 done!) They are getting a little tedious now, but still quick and easy. Just the last couple of days I've been starting to notice fatigue creep in. Not the kind of tired where I have to lie down and go to sleep right now, just a haze of tiredness, and I'm sleeping really, really well at night (I guess that's kind of a benefit!) I started to be a little pink a few days ago too, and slightly itchy at times, but I'm just putting a bit of hydrocortizone on here and there and that's all I need. Anyway, not too bad...
0 -
I am in the prone position which feels like I am being stretched on a rack. The tech said even the young women complain and I am far from young. It protects my heart and lung so I will take Advil and suck it up
0 -
Wabals, I'm in the prone position too. It's only for a few minutes, so I don't mind
0 -
I have not had a treatment yet just a simulation and a run thru. Each tim I was in the position for 20 min. The actual treatment will be shorter
0 -
I had my first treatment on Tuesday. It feels good to have that first one out of the way! All that anxiety and anticipation! The day was long but not as bad as I had thought it might be.
I have had some side effects. The very first evening I was surprised to have some nausea, although a Compasine helped that. I have had a queasy feeling in my stomach almost constantly until this afternoon (day 5); for now it's finally subsided. I've been taking Zantac and that seems to help. Constipation too, still working on that one. I have had very little appetite - no metallic taste as others have mentioned, but just not being able to think of many foods that sound appealing to me. I think it's the overall queasiness.
My next treatment date is 12/1. I'm very glad it falls after Thanksgiving, so that my appetite by that day should be fine! Thanks for all your encouragement.
0 -
Serenitysis, that's very similar to what I experienced, except the queasiness ended after 2-3 days. But it always hit the night of the treatment. For me the metallic taste came later (after a few treatments)--but you might not experience it at all. it was indeed hard to find foods that were appealing during those queasy days, but carbs were the most palatable, and Greek (full-fat) yogurt. For me once the queasiness lifted it stayed away till the next treatment, so you should be good for the rest of this cycle. Each cycle is slightly different, too--you might have less queasiness next time around.
0 -
Thanks, I hope so!It hasn't been pleasant.
0 -
Had my first radiation today. Piece of cake!
0 -
I had my 6th rad today and after met with my RO. I am scheduled for 34 treatments = 28 rads and 6 boosts. My last day will be 12/31/15. Happy New Year!
Wabals, my RO said the machine is on for 40 seconds or so.
0 -
Tiny where are you being treated
0 -
Wabals, the Hospital of Central Conn Cancer Institute.
0 -
Tiny I am having 19treatments why are you having more?
0
