Calling all TNs
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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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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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Sorry for the confusion. I am having twilight sleep or conscious sedation. Not general.
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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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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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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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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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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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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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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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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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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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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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Ag, my team wanted to do surgery first, then chemo, sothat's what we are doing.
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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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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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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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YAYYY AL!!!
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Fantastic AL. So happy for your family.
Marsha
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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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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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Mike wonderful news. Yep God is looking down on you both. 2016 is going to be a great year for you and Kathy. And all of us come to that. xx
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So very happy for you Mike. The best news!!!! Giving thanks to God. Continued prayers for your family.
Hugs
G
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Shopgal2 will be in your pocket today and hope all goes well. xx
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thanks so much cocker. I thought I felt something extra in my pocket. All went well with the sim. I got my 3 tattoos and will be using the active breathing machine to expand my lungs and prevent damage to my heart during rads. It was a little weird to breathe into a tube and hold my breath for 20 seconds intervals. My sim team said I did great. I even joked with the one male tech in the control room that he and I had the same hair cut. I took off my beanie and flashed him my 3 1/2 week hair growth. He made me laugh when he rubbed his bald head and said he'd show me how to be smooth with a razor. I smiled and said been there done that $100,000 cut courtesy of my mo. I go back next Tuesday for port films and start rads next Wednesday.
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Shopgal2 so glad all went well. Yep the tattoo's, I wanted "I love my old feller but it wasn't an option lol). Now on to the next stage which is far easier than chemo. Just remember to shove a thick layer of cream on at night but shower before your treatment. Will still be in your pocket along with all our other ladies.
Shari I planted sweet peas all the way along my garage wall on trellis but just behind all my roses. The perfume is to die for but they have grown so big and tall that I have roses growing out of the sweet peas. Might have to change things at the end of summer. How is your garden coming on. Does your weather prevent you doing too much in winter.
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Cocker - you are so, so very sweet for thinking of me and the well wishes for our baby journey! xo
Debra - congratulations!! So great to hear from you!
Happy New Year to this wonderful group of warriors and SURVIVORS!!!
So my onc personally called me on NYE to tell me that she doesn't see anything on my CT. She's still going to have radiology compare it to my last one though, but due to the holidays that might take some time. If they see the 2mm nodule, and it's new, she'll order a follow up scan in 4 months just to be safe. She also said if she scanned her entire staff, 8/10 people would have 2mm nodules in their lungs. She seemed annoyed they even mentioned it and caused me the worry. She thinks it's acid reflux and wants me to try Zantac every day for 2 weeks. If I'm still having pain at that point she'll send me for a GI workup. I had a horrible bout of sharp chest pains yesterday out of no where. Actually took an aspirin just in case lol. Also took 3 Tums and a Zantac and in 20 minutes the pain was gone! With as severe as that pain was, I have to think something would have shown up on the CT if it was cancer. And the fact that it came and went suddenly (during a meal), and was relieved with antacid, gives me so much peace of mind. Never in a million did I think acid reflux was so painful!
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ALLY!!
I am so sorry that you felt such discomfort but i am SO HAPPY to read your update!!! Keep feeling BETTER and BETTER!!Lots and lots of hugs and smiles for you!!
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Alicia, yea for acid reflux! How nice of your MO to call you and set your mind to ease. Happy dance with Zantac in hand!
Cocker we are in winter mode now with only about 3" of snow- so no gardening for me! I did go for a nice 40 minute walk this morning, it felt nice to breath the crisp air! I was looking for animal tracks and saw rabbit and deer tracks. Your sweet peas sound beautiful! I'm going to plant some next spring, I've always loved them. I bet they would make a beautiful picture climbing up a trellis, maybe you can treat us 'northerners' with one?
Shop gal, ask your RO if you can use emu oil. Most allow it but some don't because of possible antioxidants but there were a lot of us on the 'summer 2013 rads' thread that used it with amazing results. My techs wanted to know what I was using because my skin held up so well with just a few tiny blisters during the boosts. I also used a 'frog tog' cooling towel which I got on Amazon and placed it on my chest after RX but I went during the heat of summer.
Mike that is great news!! Yahoo- thanks for the update!
Hope everyone is well and happy 😃
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LillieRose, Lookforward66, Cocker_Spaniel, and everyone else who responded. Thank you. I need all the encouragement. I've been hanging in there mentally/emotionally through this and have been somewhat successful keeping a positive outlook, but the news that the chemo hasn't been all that successful just really has me down. I know it makes a huge difference when you're PCR before surgery in terms of prognosis. I have two young kids that I need to be around for - for many, many years to come!
If you all know of or hear of any other examples of long term survival when PCR wasn't achieved, I'm all ears. I love hearing those stories:o) That's what I hang on to during these tough times. This is such a great support community - thank you to all of you that take the time to reach out!
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