Stage IV NED crew : lets support each other
Comments
-
My first scan since found out I had bone mets back in Feb, is May 20th. I’m so so afraid. Is the current tx working? Has sit spread? Have the ones I had Shrunk? I have had so much bad news that I’m beyond scared.
0 -
DLittkeman: I totally get it..I'm so nervous about my next scan I agreed to have it pushed off until mid June. Despite its way overdue. However the Covid 19 pandemic was my solution for avoidant behavior. I feel good today so that's all that matters. Repeating this mantra despite the unknown lurking in the background.
Good luck. Try not to agonize until 5/20. I know easier said then done...
0 -
Dlittlekeman and Tinkerbell, I see you are fairly new here, and just wanted to make sure you have also found the Bone Mets Thread, where you can meet many others who are on treatment for bone mets and understand about waiting for those scans. I always like to have on my favorites the thread for mets location and the thread for whatever treatment I am on. Here's hoping you both get great results.
Bone Mets Thread
https://community.breastcancer.org/forum/8/topics/789492?page=805
0 -
I’m giving you a virtual hug! That’s the most wonderful news you can dream of!
0 -
Boo, I’m sending you a virtual hug and doing the happy dance for you! It’s what we dream of
0 -
I had an MRI of my spine last week. I have no new lesions and the one I had is smaller. Although I have a long road ahead with radiation and a year of Kadcyla, I’m encouraged that my treatments thus far are working. I think my chances of getting to NED are really, really good. I’m grateful ...,,and in a few days I’ll actually feel well enough from my chemo to celebrate this good news.
0 -
Dear all, breast MRI for my wife is clean! Phiu... we overreacted:/ Now on to ultrasound for the rest on 21st of May... Saulius
0 -
Oh, so glad to hear this, Saulius!
0 -
Great news Cyathea! I hope you do get to NEAD!
Fantastic news about your wife Saulius!
0 -
Great news Saulius!
0 -
Thank you everyone. It all means so much to us... Hugs, Saulius
0 -
so so happy for you, your wife and all your family and friends. Great news. Hope to be there one day :-)
0 -
Saulius: Such good news. Your wife is so lucky to have such a loving and supportive husband and the rest of us are lucky to have you post and be so supportive of us.
0 -
Hello everyone! I just read through posts since last fall. Good to read about everyone and read that there are more of us on this thread and, while there are bumps in the road for some, cancer treatment is making huge advances. So much has changed over the last 8 years. I'm HER2+ and Perjeta had just been added to the standard treatment when I got my mets dx 6 years ago and it seems the hopes for it have panned out plus they have approved other HER2+ drugs.
I'm celebrating 6 years since ending 6 rounds of Taxotere/H/P and hearing my oncologist say "hmm, looks like dead tumors on your liver", and one year since ending IV H&P and going to subq Herceptin Hylecta. It's taken months but I feel so much better after going off the Perjeta--no more muscle cramps, no more itching, better endurance throughout the day, no more digestive problems.
The black cloud of mets is more like a little dark shadow now and after years of riding the roller coaster I don't go on the huge lows anymore. I've gone from believing I had not long to live; to PTSD and depression realizing I might just live (weird?); to, in the last year or so, realizing I really, no, really! might just live quite awhile longer. As the results from Cleopatra come in and people are shown to be Living! I feel more at ease with my survivor status.
And it still makes me cry to contemplate that in this game I got lucky--I'm still in the low percentage group and it's best to stay there.
0 -
MIchelle: HI and welcome back to this thread. Congrats on 6 years. Woo-hoo!! I hope I can say the same five years from now. I had PSTD after my first NEAD. I get it. It is weird but I GET IT.
I still get bouts of anxiety. I only got my DX one year ago but I have done well. I do alright on Perjeta except for a rash that I get on my forehead. No one else seems to notice it so I guess it isn't all that bad.
I hope what I call "the black dog trailing after me in the night" gets further away.
Best wishes and stay well during this unsettling time.
0 -
Hello to all
Just checking in with an update in my treatment protocol. I am having a temporary 6 week break from Letrozole to see if this eases my joint aches. I have had 2 years of scans that state no progression but the enforced menopause has left me with arthritis in my knees and now foot. Tough decision but I feel I’ll see if there is any improvement over the next month or so. In addition I have taken a break from Perjeta so that I can have the subcutaneous H only, making my treatment a bit safer during the pandemic.
Would love to hear any thoughts on dropping treatments and whether you learnt to adjust with the added feeling of risk this brings.
Wishing you all the best,
Liz
0 -
I stopped all chemo once repeated scans showed no active cancer. The oncologist agreed that after being on Abraxane for 14 months, my body could use a break. I had started having neuropathy in in hands and feet so I was glad to stop. So far we are in observation mode. Sorry about your side effects. Being NED for two years is really great. Best of luck to you
0 -
Miche, welcome and congratulations on 6 years! I'm also HER2, haven't heard of Hylecta before though, so I'll read up on it. I very much appreciate there are a lot more drugs for us now.
Liz, I've only taken two-week breaks between changing AIs, but each of those times I noticed great joint pain improvement within one week. Hope the same for you and you'll enjoy that tx break.
0 -
Hi all
Thanks for the replies so far on stopping/pausing treatment. Bliss- really hope I see a difference. Only been off Letrozole about 4 days so far.
L x
0 -
Dear Miche, thank you for your beautiful message. It is very hopeful and a wonderful summary of where we are now compared to people 10, even 5 years ago. I think people (we too?) never forget what bad happened but very quickly forget about the good. We can be so easily convinced that the world is bad, but it is so difficult to convince us that maybe... the world and life are good and we simply must be... thankful... Thank you gain, Saulius
0 -
Jackboo, I wish you the best. It's so hopeful to see post of people being able to take breaks.
0 -
Good to hear Salius’ wife’s great news, Shetland is back albeit battleworn and folk are having wee breaks. I too have just had a 1 cycle break from Ibrance, but continue Letrozole, just to give my system a boost. My MO said I’ve been stable for so long ( 2 years) that a wee break wouldn’t make a difference. Back to clinic tomorrow though and I wouldn’t been keen to take any longer off.
Liz did you make it toScotland?
0 -
Bliss58: Herceptin Hylecta is just the subcutaneous Herceptin. Same drug. I was so so very glad to get rid of my port though. 5 yrs 5 months with a port was enough!
0 -
Hi Karenfizebo
Went to Edinburgh during the storm weekend in Feb. Had a great time, although the castle was closed due to high winds. Can’t wait to return and tour. Something to look forward to after lockdown. Glad to hear you are doing so well.
0 -
Hello all
New to this group. I had a reoccurrence that was caught on a non-related scan last week. Three hot lymph nodes and a nodule that’s grown in size on my lungs. I had just finished radiation in March 2019 after a unilateral mastectomy, eight dose dense treatments of AC/Taxol chemo and 28 rounds of rads.
Bad news. Good news is I have a new medical oncologist. I switched to Loyola, an excellent teaching hospital in my neck of the woods, after I was treated pretty poorly by my previous medical oncologist.
I meet with them to go over my treatment plan tomorrow. Nervous. Slightly terrifying. Looking forward to the inspiration and support the groups offered me the first time around. Thanks ladies, just reading through your threads makes me feel a little calmer
0 -
Michel, thanks for the explanation. I'm still doing infusions of H.
M-and-M37, welcome! Hoping your tx plan meeting with the new team went well.
0 -
Dear all, all last scans/ultrasounds show NED for my wife, so already 25 months NED in the liver, just some fibrosis is seen. Let's hope we continue like this for a long time. Phiu... Saulius
0 -
Great news Saulius!
0 -
Woohoo Saulius!
0 -
Saulius: . I am so happy for the both of you!!
0
