I have spinal cord metastasis which is obviously very worrying
Has anyone else been diagnosed with these?.. I’m now having taxol chemo and scared ...I’ve been googling and frightening myself as the prognosis is extremely poor so I’m considering stopping treatment as there seems little point
Barb xx
praying for you, sweet lady. follow His peace, only God knows when our time is up; miracles happen everyday, why not one for you? Dear Jesus, I ask you now, for a healing for Barb, from the top of her head to the soles of her feet and I give you all the praise and glory! thank you Jesus that you always hear our prayers, amen! Isaiah 53:5 By His stripes we WERE healed!<3 xo God bless you and heal us all, amen!
Barb I'm so sad to here this new finding. Did u have a lumbar puncture of your cerebrospinal fluid to reach this diagnoses? About 6 months ago from the findings of a MRI my Oncologist was concerned there was impinging of my Lumbar 4 vertebrae onto my spinal cord. They did a lumbar puncture and it was negative but they were thinking of performing a second one cause sometimes u need more than one sample to pick it up. I hope to hear back from u and that I can help u.
lori
No I haven’t had a lumbar puncture...I have some dural thickening though and my platelets were low so I think this has been deduced from that mri scanThe issue with my eye has got worse and I have a numb lip
Barb xx
So Sorry to hear this news Barb. I appreciate how distressful it must be for you to hear about spinal cord mets. I must admit I am not familiar with prognosis but suspect your team will be able to discuss options with you. Taxol is a tough treatment I had it for 6 months At the end it will be up to you to decide whether it affects your quality of life too much for little or no benefit, hopefully your medical team can advise you. After a lucky break on a 5 months clinical trial ( the first treatment that stopped progression in 2.5 years) I have just been kicked off as liver function failing ( so they think it is too dangerous to keep going... The irony!) . I have been put on carboplatin and be warned it is the 7th and last treatment. The team have made it very clear that if there is no obvious benefits they will advise stopping treatment. So I might be a couple of weeks away from making the call myself and to be honest I have reached out for counselling as I am not quite sure I am ready for accepting the « no treatment « road .... I really thought I was ready but as I am now reaching the unavoidable I must admit I am chickening out and l am worried how I will take it when I am advised / told this is it... was hoping to do it with acceptance and dignity... Not so sure now!
You have been extremely strong throughout even in touch time and it sounds like you are really thinking through with a cold head but I think what I am trying to say is take the time to think it through and speak to your team because once decision is made you are left with it...
Thinking of you too Marie x
keeping you in my thoughts. may you be at ease.
Thinking of you Barb. This is a tough call. You have had a lot to deal with lately.
I know you will do what feels right for you. But as others have s as I'd think it through carefully. ❤️🌈
Thinking of you x
I am so sorry to hear this news. Although I haven't read much about spinal cord mets, I did find this, "Historically spinal metastases have been considered incurable. However, recent studies suggest that with aggressive therapy, including surgical resection and/or stereotactic radiosurgery, some patients with one (or only a few) spinal metastases may have a chance for cure. I n patients with many spinal metastases, a chance for cure is unfortunately unlikely. However, spinal metastases can be controlled, either temporarily or indefinitely, with treatments such as surgical resection, stereotactic radiosurgery, fractionated radiation and chemotherapy. The goal of these treatments is to control (stop or slow down the growth of the spinal metastases and prevent or slow down the growth of new spinal metastases). Treatments for spinal metastases can provide several months, and perhaps years, of remission and better quality of life by keeping the spinal metastases controlled during those times."
As girlsptz eloquently stated, each of us needs to make a decision on our own. You've received excellent input, and please know that you are in our thoughts and we hope that you will obtain input from several medical and radiology oncologists that will help guide you.
You are very special to so many, and please know you are in our thoughts!
Hello Barb. I will echo my support like others have so beautifully said.
I want to delicately add an elaboration that might be useful as you deal with weighty concerns. You have spinal Mets progesssion along with your issues with your eye and lip , not to mention the existing bone Mets pain you’ve previously mentioned
The enduring challenge we all seek is quality of life.
You definitely should speak with a team which includes your doctor, any social worker or counselor who you respect, and a palliative care doctor. You have a brilliant mind as you’ve shown over the years. Collect all that data and then, after you’ve heard them out and had time to digest it all, assess what makes sense for you.
Think of it this way if it helps: When you were actively working as a dentist, a patient would present with certain issues. You likely wondered if it was a particular thing. You were smart and clinical enough to wait for all the data and tests to arrive before assuming a course of treatment was warranted.
Hard as it is to avoid being swept up with understandable anxiety, I respectfully and lovingly hope my suggestion helps to guide you in a good way. “Dr. Google” can be terrifying and not comprehensive.
I am sincerely sorry you face this challenge. We are here for you always.
Barb, I am so sorry to read what you are going through.I have not posted in a while. I was on Xeloda for 2 cycles, then the scan showed the liver tumors grew in size and number.
Then I went to IV chemo, Doxil. I was on that for 2 cycles and the CT scan showed the liver tumors were continuing to grow in size and number and were now throughout the liver.
By that point I was in full crisis mode. I then began the last conventional chemo Taxotere with Cytoxane. I consulted with a doctor in Houston, Texas and at one at University of California San Francisco. Both agreed this treatment should address the liver tumors.
I have just had my 4th cycles. I am tolerating it well.
After the 2nd cycle the scan showed my liver tumors were stable. At that same point, I no longer had any bone pain anywhere. I had been having bone pain constantly over the past year and needed tylenol 24/7 just to get up and function.
My primary left breast tumor began to soften, and now is the best that it has been since dx almost 3 years ago.
Please do not give up hope. Stay open and positive.
Take care,
Karina
Thinking of you Barb and sorry you have this now to deal with ... I don’t know anything about spinal cord mets , but get all the information you can from your onc or even a second opinion ( and have someone with you to take it all in ) . Sending love x
my friend has an AA aneurysm. after reading yesterday that over 5 cm size they recommend surgery at 60 but if over 60, then up to 10cm to 70, then no surgery after 70 as the surgery becomes more dangerous than the thing itself. talk about a threat, this thing breaks and you most likely bleed out, but the question is, how come we don't have similar guidelines and common sense limits when dealing with cancer, and the harmful effects of some treatments? I did read somewhere that very few ever die from bone cancer, it's the treatments. throwing it out there for thought and not everyone on here is a scholar so be gentle please ladies, as you always are. try and understand my question here. Back to the MBC, it does me great good psychologically to do my little side treatments that have no side effects because I feel blessed to be doing SOMETHING not harmful and possibly helpful. I'm still taking the ginger, 2 caps in the morning and I find when I chase it with 2 cups of water it goes all the way down to my tummy and no indigestion. I also still take the melatonin at night which is supposed to be a cancer fighter. And the other thing that you know about but I won't mention again on here, still doing it, not one side effect. God bless you and heal us all in Jesus name, amen! <3
What are the ginger capsuals?
powdered ginger in capsule form fights cancer is what I have read. I get mine from Swanson's by mail, they always have great sales 
I haven't anything to say that hasn't already been expressed by someone else - you have a lot of very wise advice and insights above - this forum is so good - but I DO want to send you love and hugs and all the strength I can muster and my instinct is - keep going! It's too soon to throw the towel in - this is such a roller-coaster this thing but maybe the ideas above will work for you - radiation therapy - whatever. Keep us posted - we are all rooting for you every step of the way x
Barb,So sorry to hear your news. But, I was on taxol my first go round. It wasn't too bad. I was just very fatigued.
I wish you success and no side effects!
Love and hugs,
Marianne
Dearest Barb
So sad to read your post. Please know that you are in my heart and my prayers. Whatever you decide, may God shine His healing light on you and provide comfort and peace. Hope you find lots of time to rest and take deep breaths. God bless you, dear one. 💗💗🙏🏻🙏🏻
Linda
Dear Barb,
I think the other ladies on here have given you lots of good advice. While I can't say what treatment is best for you right now, I do think it's a good idea to explore all your options and to talk to your oncologist about what you are going to do next. Please know that I am thinking of you and hoping that your next treatment will kick the cancer back and that you will soon be stable again.
Take care,
Sophie
Dear Barb,
I am sorry to hear what you are going through. You said the metastasis is in your spinal cord. I was lucky enough that in 2015 it was in my T7 and 2020 in my T5. They took care of it with radiation. It would be nice if they could do the same for you. Kay
Me too, me too on praying for you and I have it in my spine also. I suggest staying on treatment. I was on taxol for a while, it helped. Dear sweet Barb, my theory is never give up, pray and fight this with the best treatment available. I try to think of little things to do for myself, simple things for me to enjoy, focus on how my friends & family are doing, keep busy with what energy I have (with these things it is more difficult for depression to set in)---I will be praying fellow warrior.
BarbThere has been a lot said in reply to you-I can’t think of anything more to say other than I am sending hugs, love and prayers to you
Sending the best to you always, Barb.
Hi Barb
I’m so very sorry you find yourself in this position. You’ve been given lots of valuable advice from the knowledgeable and so very helpful ladies on this forum.
I’m not sure what I’d do in your situation but I think I would at least try any suggested treatment. You can always stop it at any time you wish.
I had a CT scan today and went into the tunnel with my fingers crossed 🤞
I have however had 5 chicks 🐥 🐥 🐥 🐥 🐥 hatch this week so they are currently distracting my mind from COVID and cancer.
MBC is a tough journey and you have handled all the challenges thrown at you so very well.
We all love and care about you so much on this forum.
Wishing you all the very best possible - you so deserve it.
Please keep in touch.
Jo xx
I’m sorry to read your news Barb. I don’t have anything to add to the wise comments from all of our friends, so I will send you love and hugs and the ability to calm your mind so that you can make the best decision for you.
Elaine
Hi Barb: Sending hugs & prayers of wisdom to you as you research & weigh your options. ❤️🙏❤️
Barb never ever give up. You have been an inspiration to us all over time. You have been riding a rough road recently but as you know your strength can get you through this. Sending virtual hugs and come on, you can do this.Cheryl
keeping you in my thoughts. may you be at ease.
Hi BarbI know this new challenge may feel almost overwhelming.
Breathe.
We all are here for you ,
praying and willing THOUSANDS of positive outcomes for you.
I keep you in my prayers and positive thoughts every day.
Much love,
Mary
Oh, Barb, I'm sorry to hear how frightening this is! Do you by chance have lobular bc? It goes to places that most bc doesn't. I hope your onc is able to come up with a plan for you that gives you peace of mind. Our quality of life is so important while we're living with this blasted cancer! And each of our experiences are unique to us, cancer cells being so very individual in how they respond to meds. Taxol has two close "cousin" drugs, Taxotere and Abraxane, so if side effects of the taxol are too much for you, switching to one of those meds might be a good option for you. (I can't believe I remember that...my memory had not been anywhere near its best the last year or so.) I have extensive bone mets in my spine (vertebrae) but the worse problem I've had is from preexisting spinal stenosis that has damaged the sciatic nerve leaving me with neuropathy in my legs and feet. Very little feeling in my feet. I hope you will be able to avoid nerve damage. Know that we are here for you, just as you have been here for so many of us! Sending love and prayers for healing ....
You are not a statistic! Try to forgo the urge to google this crap as it is depressing with what we are going through. I say that understanding the medical background, as I too have that, and wanting to research and investigate every medical thing. But, i have come to realize it only makes things worse.. This is a bitch and dealing with assuming our demise will be soon, is difficult to come to grips with. I believe I now have after 5 months of turmoil, pain, etc. No-one can possibly understand what we are going through unless they have lived our past lives. "Walk a mile in someones moccasins" Truer words were never said. Attributed to her cousin Chief Joseph, Mary Lathrap wrote it. . I have mets through out my skeletal system now but frankly I am much more worried about my liver failing. Have you started taxol as yet. I just had my second week treatment today. i am still up at midnight from the steroids but I feel today, because of that energy that I could live another day. I am grateful for that and probably did way too much all day but what the heck! Please keep us informed we all have great compassion and empathy for one another as well as being helpful with our personal adventures in cancer!
I'm so sorry Barb to read your news today. I missed your post. You have been going through so many changes lately. It seems our paths are very similiar in so many ways. I too have had to make decisions regarding treatment health longitivtiy and quality of life. As you I have tried so very hard to stay well but each test there is another issue. The pain doesn't stop anymore. I have brain mets now. I figure that the direction is already set for me and I will take the path that he has chosen for me. Take care of yourself........ Be safe!!!! Big hugs Shelby
Dear Barb, I am so sorry you are having such a b... awful time. I have only just seen this post, I have not been posting or looking much these days. What lovely comments the others sent you. You are so dear to us all and inspire us with your straight talk and humour. Draw on that courage you have and know that we are with you all the way whatever you decide. Fayx
Living Alone with Mets
MRI Scans - changes in Mets
Mets to liver 
Liver, lung and spine mets
Faslodex + Ibrance - new mets
