Stage IV NED crew : lets support each other
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Vevs,
So pleased for you.
L
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Olma, Nayda and Vevs, cheers to such fabulous news! Let's all keep moving forward.
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Rena: I read your post about NEAD and stress. I told my MO I was having PTSD after being NEAD and he actually had to consider it -- like none of his patients have mentioned it before. But he got it. Like being in a war zone for months and then the shooting stops. That's how he phrased it. Yup! So why am I not relaxed? Because it (MBC) trails behind me like a black dog in the night. Will it last? How long will it last? I was lucky to already be retired so I didn't have to plan around work issues. When I was first diagnosed and I was getting rid of some of my arts/craft books that I hadn't touched in years my husband was afraid it was a sign I was "giving up". It scared him. Nope. Just getting rid of a whole lot of books that I hadn't opened in a least 10 years. I am NOT GIVING UP Some days are better than others but there is no day I don't think about it, and the upcoming scans and all the other crap. But I was frozen for awhile and could not bring myself to enter into activities that I might not ever complete, and I couldn't even find enjoyment in those activities. It has taken about two months but I am now feeling like doing the stuff I did before -- making dolls and other artsy things. But I still think --- should I travel soon? Will I be around or healthy enough to do later? I have to keep going back and reading posts from the NEAD ladies who have several years under their NEAD belts. They give me hope.
I, too, have not sought out counselling. I know why I am anxious, get depressed. I have supportive friends, a super husband. I breathe in through my nose, exhale through my mouth when needed. I take walks in the woods. I try to practice yoga. I write in a journal. I am back to creating things. I am not sure what a counsellor would offer. It is the ladies on the board who I feel I can best talk to if I think it might not be right for friends and family. I would be nice to believe in a Higher Power,and the comfort it might bring but my spirituality lies in the Turning of the Wheel.
I do not go to the Forum very often. I rejoice in the good news but the bad news brings me such sorrow and sometimes amplifies my fears.
Rena, you will find a path to take and know that there is always an ear on the Forum to hear you.
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PET scan results tomorrow
I feel ill but I think it's just anxiety. Hoping I can stick around here a bit longer. 0 -
Good Luck tomorrow AllyBee. I'll be in your pocket.
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Rena: after I gave the deep breathing, walks, journaling etc --- blah blah -- that are always given as ways of coping I should have added : Did it work? Probably not. I am still anxious, get depressed but I suppose doing something is better than nothing at all. Ativan helps.
I am newly NEAD. I am hoping I can learn to relax between scans and hope my next one is also NEAD. AllyBee: I hope that scan went well and will check in to see the results! Wishing terrific news!
Hugs to all. I'll write some time about the Spirit Doll workshop I attended facilitated by a "Certified Shamanic Practitioner" --- who knew there was such a thing as a certified shaman!? It was a great experience and did leave me feeling great.
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Elderberry, you've just voiced how I feel most of the time! Thank you.
My creative bit is mainly singing.... my husband despairs I will never do that again. But I think I now can after several years of losing my mojo when the primary hit. We'll see.
I do the most I can to help myself. Physically active, mindful, reiki, sleep, complementary therapies, spending time with the people and animals I love ( I know ....but a very cute cockerpoo pup is a real booster).
Spiritually I believe there is a thing but have stopped engaging in religious practice... although I find the rituals comforting. And breathe.... over and over again... Bythe way the wind is blowing hard in this pic..I am a little slimmer than this!
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Checking back in ladies. PET results were not so good. They found a highly suspicious, likely met in my spinal cord or possibly the lining around my spinal cord (Not the bone). I have an MRI tomorrow for more detailed imaging. I will most likely need urgent radiation as there's a possibility that it could cause paralysis or incontinence. I feel like this is scarier than my brain met but mainly because I know nothing about it. I hope to keep seeing positive stories on here and maybe get back to NED one day.
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Hugs , Ally
It sucks
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Hugs , Ally
It sucks
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AllyBee,
Not the good news we were hoping for you. Hugs sent to you.
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AllyBee: Oh I am so sorry. We were all in there cheering you on. BIG HUGS
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Karen: I gather that is your little pooch. I find my cat Aelfric is a great comfort -- even though he can be so annoying. Cats have their own minds. Ha ha. I live on the west coast of Canada (aka the Wet Coast) . We get high winds. More big blows than we did in the past. I guess it's part of climate change. I love living next to the Pacific Ocean. I really should spend more time on the shores. I was never athletic enough to do the mountains justice and I hate snow so that leaves out skiing! But we have great parks with old growth trees/forests. I guess the anxiety never ends. SIGH.
Keep well
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AllyBee,
Rats! I hope your team can zap that thing into nothingness pronto!
By your side,
Tina
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Just curious. How many of you no longer take any cancer meds? And how many years of NED did you go before stopping the cancer meds? I'm just thinking positive and shooting for that goal.
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Simone,
I was NEAD for about four years before I stopped treatment (Fasoldex) for cancer a year ago. I am still on a bone strengthener, though.
Tina
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Tina2-I honestly pray to God I could atleast get to where you are.....NEAD and stopping all treatment sounds like an absolute dream!
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So sorry to hear this, Allybee. Hoping your doctors can nip this right in the bud for you and get you back to stable ASAP! Love and light xo
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That is awesome Tina. Being able to quit the cancer meds is a dream for me too. I know there are other women out there. Pat from the ibrance thread said she knows a woman that is 20 years out from MBC and ned. She also isn't on any meds.
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Agree, It is so great to know there are some of us metastatic people who are able to get past meds. For the HER2+ ladies among us, I have heard that two of the women from the original Herceptin trials were considered cured and went off Herceptin.
One of them is Barbara Bradfield, who was played by Bernadette Peters in “Living Proof” the film fictionalization of Dr. Slamans’ struggle to get Herceptin into clinical trials.
Tina, wish you many more years of NEAD.
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Simone,
The only med I'm on is letrozole. I Had chemo for 6 months last year, Almost the all clear in December after 3 rounds, Mastectomy in feb (Declared NED then ) , Tamoxifen, Rads in April-may, Oophorectomy in July. and switched to Letrozole after that . Scans. in April and August were clear. I have another PET in a month and if that's all clear , I move on to 6 month intervals. So I guess I'm still on a cancer med, but it's not so bad, I'm sweaty and tired, but I feel mostly good
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That's great BAP. I hope your next scan is clear also. I was on letrozole for ten years for adjuvant treatment. You're right it isn't too bad. I had a 7 year break from all meds until the cancer came back. They put me back on letrozole with ibrance and I am NED once again. I am hoping to stay that way for many more years.
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Olma,
That is inspiring to hear about more women out there living long lives. It is possible.
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Simone80 -if you don’t mind me asking what Mets do you have
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I echo hope that we can all be drug free. I have been NED for 18 months and am ER and Her 2+. I had a small recurrence in the internal mammary lymph node that put me at stage 4 after 6 years being ‘ cancer free’
My quality of life is pretty good apart from aches/ arthritis from Letrozole, however the 3 weekly IV of HP takes it out of me emotionally and physically. I’m going today and I really feel like skipping it.
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Hi Faith,
I had multiple bone mets, superclavical lymph node, and a couple lymph nodes between the chest wall and lungs. They are all resolved now.
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jackaboo,
Wow, you were ogliometatastic. I've been reading that they are starting to treat that with an intent to cure. Did your MO ever tell you how long you would be on treatments?
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Hi Simone
Thanks for your interest. He is keen for me to keep going and hasn’t ever had a patient who requested a cessation of treatment. I have also read that oligometastatic disease could be treated with curative intent. I think I will see how things go and for now count my blessings.
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Hello my friends!
I am in such limbo of unknowing that I am simply going to say I am stable!
My last neck MRI showed confusing results of uptake increase and uptake decrease. So unclear! My MO is going to track my TMs since we haven't really ever done this. We did test the CA 15.3 when I was newly diagnosed and then a couple months after. It had gone from (pre medication) 250 something and then down to (post-a couple months of medication) 180 something...and now, 2.5+ years later it was 68.
So he feels that we can harness the powers of the TMs to get some information into what is happening.
Sounds reasonable?
So for now, I am declaring myself NED!!!
Love
Philly
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LoveFromPhilly: My MO gave me a copy of my last PET scan. It was excellent in the organs and such. Great news. I queried the "physiologic uptake is present within the neck." I sent him an e-mail (yes! A doc who will accept and respond by e-mail. Lordy -- I love my MO) asking about that. His response was "...physiologic uptake just means normal uptake. Heart, brain, liver and kidneys use more sugar than other tissues so they always light up to some extent...."
But my neck isn't an organ/tissue. I never had bone mets. So I will clarify that when I see him next week. He'll tell me to chill and wait until my next PET in a few months. It is hard to chill. We all know that.
Jackboo09: I stopped Taxol in late July/early August so I have been on only H&P for a few months. So do I blame my ass-dragging and emotional roller coaster in H&P or just being newly NEAD? The general anxiety of being MBC; NEAD or not. I know it can take a looong time to get over the crap Taxol visits upon us. Happy to see my hair growing back. I no longer look like an inmate from a 19th Century insane asylum, especially when I wear long white cotton nighties. Ha ha.
Wishing Stable and NEAD to all!!
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