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  • Lou53
    Lou53 Member Posts: 81
    edited January 2016

    Thanks everyone! This stuff is so scary.

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  • Shopgal2
    Shopgal2 Member Posts: 649
    edited January 2016

    Good to hear the info about left sided rads. I go for my sim Tuesday and will have whole breast on my left side. For the sim & rads will it be ok to wear yoga pants in the room? I am afraid of being freezing with my poor bald head. NowI get really cold when my body is cold. That is when I'm not hot flashing :))

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  • Meadow
    Meadow Member Posts: 2,007
    edited January 2016

    Welcome Mikie! Hang in there Lou!

    And Happy New year!

    Shopgal, I always was cold in there...but they offer warm towels and blankets...I always took two. Yoga pants should be great, comfy,

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited January 2016

    Yoga pants are fine 😊They should offer you warm blankets, if not, ask.

    Cocker, THANK YOU for being you!

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited January 2016

    I'm getting my port on Tuesday, with "conscious sedation". Regular anesthesia makes me nauseous, so I had the scopolamine patch with my surgery and did great. Do any of you react the same way, and did the port procedure make you sick? I'm wondering if I should take a Dramamine pill before I go in.

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited January 2016

    Shopgal2 when you go to simulation you are not in there very long. You can wear whatever you want on the bottom half but will have to undress the top half. They will put a couple of little tattoos on you which are so minute you can hardly see them and you will just feel a slight scratch. This is so they can line you up each time correctly. If the cancer was in your nodes you have to lay with your arm up but once you get into position its quite comfortable and as I said rads is only for a few minutes at the most. The bed you lay on is very narrow but as I say you are not there long. Mine took half hour at the most. My radiation centre is so different to most of you girls. We have a facility which is two hours away and radiation is only done there at the hospital which is close by. These centres are in other towns but my nearest was two hours away. I had to go on Monday mornings and then had to live there all week and come home on Fridays after rads for five weeks. Apart from being away from home which I missed for the first week!!! it is just like an exclusive holiday resort. Huge, modern and beautiful. All meals were made for us by chefs and you could have physio, massage, get your nails done and more. There was a library, games room and television lounges or you could sit and read in one of the quiet rooms. My room was large and so was my ensuite and rooms were cleaned each day by maids. There are registered nurses on duty day and night in case of any problems. One lady with bowel cancer had some vomiting one night. It is called the Daffodil Lodge because daffodils represent cancer in NZ. This was all free and we didn't have to pay for anything except our big pots of cream that they recommended. The lodge was for other cancers as well as breast and I met some great friends there and we laughed almost all day long. There were shuttles to take us to the hospital, five mins away, and to bring us back. Out treatment only took half hour each day and the rest of the time we went to the casino, shopping, to the lake with a packed lunch made for us and we had to be back by 10pm cause that's when the gates closed. It was just like a holiday and we all loved it there. Only one lady had some burning from the rads and she had a very fair complexion but didn't bother to put on any cream. So for me my rads treatment was wonderful and went without a hitch. I wish you all had a facility like it in your country.

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  • Angtee15
    Angtee15 Member Posts: 209
    edited January 2016

    Cocker Spaniel-that is what I call healthcare! I am moving to New Zealand

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  • Shopgal2
    Shopgal2 Member Posts: 649
    edited January 2016

    thanks meadow and littleblue. I am getting nervous about tomorrow. Cocker you write so beautifully and know just what to say to make me feel better. I am getting whole breast, no nodes as they were negative. Your lodging facility sounds wonderful. I would love that. I know in pa there is a hope lodge. I live about 45 min from my hospital so I will commute into the city. If it snows I can stay with my one sister, who lives in a condo across the street from the hospital. And I like that daffodils represent cancer in n

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  • Ag23
    Ag23 Member Posts: 37
    edited January 2016

    Are there any TNs out there that also have weakly positive PR receptors? My PR+ receptors are estimated at 40%. My MO said this was a little unusual...

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited January 2016

    Hello TNBC Sisters and New Friends!

    Checking in with my annual post - today is my 4 year healthy victory!

    Many prayers that 2016 keeps everyone on the path of good health and prayers that this year brings more advances into treatment, discovery, prevention, and market-ready drug approvals.

    Love all of you!

    Debra

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  • Shopgal2
    Shopgal2 Member Posts: 649
    edited January 2016

    Lovemyvizsla I had twilight sleep in an IV for the port install and removal. No nausea; they woke me up in the or before I went to recovery. Maybe try twilight anesthesia instead? It's not as heavy as general anesthesia. Port install is much easier than lumpy. You will feel some uncomfortableness in your chest and shoulder afterwards when the meds they give you for surgery wear off. I just took Tylenol for pain. You may feel some stiffness after, but that will get easier in a few days. My port helped a lot during act. Act is tough but doable. Drinking a lot of water helped, eating small meals, and lots of rest. Take it one week or day at a time. Keep checking in here to let us know how you are doing.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited January 2016

    Sorry for the confusion. I am having twilight sleep or conscious sedation. Not general.

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  • slv58
    slv58 Member Posts: 1,216
    edited January 2016

    Debra, so good to hear from you, I think of you often. Yahoo on four years!!!!!  Thanks for checking in with such encouraging news!!!!

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  • SA8PG
    SA8PG Member Posts: 371
    edited January 2016

    Debra thank you so much for sharing your praise report of 4 years NED!!!! Congratulations. We are all so happy for you. :))))))

    Hugs

    G

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited January 2016

    Debra, - Thanks for sharing your wonderful update!

    Cocker, - As always, your posts are SO well written and expressed! (and your rad center sounds terrific! Here, I stopped on my way home from work for rads. As you say, it took longer to get undressed and redressed than the treatment each day! It was fine, though. ;)

    Lovemyviz, - Port install was not bad at all, - and then I started chemo the next day, with the steri strips still in place. Other than that first treatment I applied emla cream before going to center. It helped!

    Getting cold here in NY! Finally feels like winter! =)

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  • Ag23
    Ag23 Member Posts: 37
    edited January 2016

    All TNs...I need some encouragement.

    Found out today that I'm not responding all that well to chemo and they may scrap the rest of Taxol and go to surgery. Anyone know of any long term survivors that did not respond well to chemo? Feeling kind of hopeless...

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  • Angtee15
    Angtee15 Member Posts: 209
    edited January 2016

    Ag23--

    I am TN and doing neoadjuvant chemo as well. My MO said going directly to surgery would be the path if they didn't think I was responding. It's too early to tell for me....how did they determine you weren't responding? I am sorry that you have this bump in your treatment plan. I am sure you aren't mentally ready for surgery but I don't think this is uncommon. What else did the MO say?

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited January 2016

    Lovemyviz just like anotherNYCG my port insertion was no problem at all. I did have a light general but the procedure was quick and I was not sick. I went home the same day and had chemo the following day. I also was given EMLA patches and apart from a little pressure (not pain) when they used the port each time that quickly went away it worked very well as I have hidden veins. I loved my port as it made things so much easier for me. When I had it out my surgeon did it in the theatre but only with a local injection and I never felt a thing in fact I was surprised at how quick the removal was.

    Ag23 how have they found out you are not responding to chemo. Did you have AC first as Taxol is usually given as a back up to AC and not a first line treatment. There were other girls on here that did not respond to chemo but I think I would put my trust in them and go to surgery. I'm sure things will work out and all will go well. In your pocket for a good outcome. (((Hugs))).

    Happy New Year to you Inspired. Glad to hear all is going well for you.

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  • Ag23
    Ag23 Member Posts: 37
    edited January 2016

    By feeling the lump each time - that's how they've determined that it hasn't shrunk that much. It started around 3.8 and is only down to 2.5 or 3 cm after 4 rounds of AC and 1 Taxol. They are trying one more round of Taxol tomorrow, and I go back on the 18th for the 3rd., But, if on that day when the dr examines me prior to the infusion, it hasn't shrunk, they are going to skip the other two rounds and go to surgeyr.

    Just feeling defeated and need to know that there is hope for long term survival, even if response to chemo was poor.

    Thank you all.

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited January 2016

    Ag23 don't give up hope. I never knew whether AC worked for me either as I never had a lump in the first place and I had to stop Taxol on treatment 6 as I had a reaction to it. I had microcalcifications which still ended up stage 3a, Grade 3 and it had spread to four nodes. There are many treatments that could be the right course for you but I think if it was me I would be going for surgery and then discuss further treatment options with your oncologist. I'm sure there will be long term hope for you as there was for me (4 years out) and many other ladies on here. Don't give up there is too much going for you and you will find great support on this thread. Sending warm hugs (and believe me in NZ at this time they are warm hugs) and always in your pocket.

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  • JAN69
    JAN69 Member Posts: 947
    edited January 2016

    Oh Cocker, you still remember me. I notice your 4 year survival. This month marks my 5 year anniversary. I drop by and lurk here and notice so many new members. How sad and how good. You are such a blessing to all of them. I remember your daughter, dh and his cafe, your cake conventions, and your energetic dogs. We've had some good times together. I don't have enough energy to keep like I use to, but you know you are in my heart. We are currently getting our much needed rains. The burned mountain sides are trying to slip down into the valley, but we are safe where we are.

    And always waiting for baby news.

    Best wishes for a happy healthy new year to everyone. J

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  • Meadow
    Meadow Member Posts: 2,007
    edited January 2016

    Debra, so good to hear from you! so glad you are doing well.

    Ag, I am not medical, but I would think that if your tumor is shrinking, that is awesome! I know we want to trust and follow our team and should, but I would think that if you are tolerating chemo well (side effects are not literally killing you) and your tumor is responding, why not continue? This seems like a GOOD response. Any other opinions? Hang in there, do not be discouraged.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited January 2016

    Ag, my team wanted to do surgery first, then chemo, sothat's what we are doing.

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  • Lookingforward66
    Lookingforward66 Member Posts: 147
    edited January 2016

    Ag23,

    I had surgery first then AC but had to stop after 2 rounds as reaction to the chemo. Never even did Taxol. I had 1 node involved. As of last December I am 3 years NED. It is doable. Best to you. This isn't easy but this is a great place to get the boost needed in confidence. We are all here to help each other. We all get versions of Ph.D.'s in TNBC. Best to you. We are here for support & large pockets are a necessity.

    Inspired, thanks for checking in you are about one year out from me. Glad to hear your doing good. Take care.

    Marsha

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited January 2016

    Jan my dear friend. Do you really think I could forget you, not a chance. I remember all of the ladies that have come and gone on here and often think of them. My old feller brought me an egg chair for Christmas and it's set up outside on the porch. Every time I take my book and sink into it I think of you and me on your mountain with our books. Some of our fire fighters are now over in Australia to help fight their massive fires. I'm glad you have rain but hopefully not too much. Wow five years out, you got this girl and cancer can take a hike. You are right we have had some good times on here, I remember when we laughed every day. Rest assured you are always in my mind. Love you heaps. xx

    Sweet Meadow you always give such good advice. xx

    Ag23 Like Marsha I had surgery first because I just wanted it gone, the quicker the better, but a lot of ladies on here had the chemo first. I guess it is just what feels right for you. Gentle hugs. xx


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  • ALHusband
    ALHusband Member Posts: 344
    edited January 2016

    Hey ladies. As I had posted, my wife had discovered a kinda sorta lump on her incision prior to the holidays. BS did exam and assured her it was nothing, but sent her for an ultrasound for "peace of mind". Well, that peace of mind came to be. Ultrasound on 12/31 revealed that it was indeed nothing. Scar tissue. All the glory to God! Happy New Year to all!

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited January 2016

    YAYYY AL!!!

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  • Lookingforward66
    Lookingforward66 Member Posts: 147
    edited January 2016

    Fantastic AL. So happy for your family.

    Marsha

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  • LillieRose
    LillieRose Member Posts: 112
    edited January 2016

    ag23- don't lose hope! I started with taxol (I was on a trial) and after 6 weeks my tumor didn't feel different so they sent me for an ultrasound! The ultrasound showed NO change! They didn't think the Taxol was working... They have me 8 weeks on the Taxol and nada... I was terrified! They said I could go on to AC chemo or have surgery... I decided to roll into the chemo because I didn't want to stop the chemo as wait the 3 weeks for surgery... It was honestly the scariest part of this whole thing for me. I went on to have 4 AC treatments... During this time I researched a ton and found plenty of TNs that either responded better to AC or Taxol but that all mostly responded to one. DO NOT give up! At my BMX my path report came back PCR! They never saw it coming... All my doctors were shocked. Honestly we have no idea how any of us will respond to chemo! Have hope! The taxol could work great! If it doesn't, your tumor is still on the small side and you have surgery and radiation as options!

    Also before my PCR I found a trial testing Cisplatin and Rads at the same time... I was planning to joining but got bumped out after my Pcr! Look into trial options with different chemos.

    Good luck!

    Happy new year all!! xo

    Congrats Al! And cocker I love your posts!

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  • njprn
    njprn Member Posts: 39
    edited January 2016

    Hi all, I don't post often but check in periodically. Jan is dx month, 4yrs next week so I think it's on my mind more often than usual. To newbies it really does get less with time.

    Just wanted to respond to LillieRose and Ag as I too am seen at DF and I loved LillieRose's response to hang in there and if Taxol isn't giving desired results there are other drugs and trials. The positive side to Ag's situation is when surgery is done first we don't know for sure if the chemo is the best match but neoadjuvent the docs can evaluate that and make changes as needed so as not to have you taking something that's not right for you. Ask about platinum drugs or PARP inhibitors, good research out there for TNs also genome testing if you qualify. We should try to meet! I am in NH if you need anything! Best to all, Nance

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