OK I have to admit it now. All messages have failed. Fazlodex. Letrozole. Aromasin. Chemo. And many more. I am now just waiting for my mobility to get worse. I am quite active at the moment but it will change. Mt frightening thing at the moment is that the sores and spots on the same breast of the tumors are painful and getting redder and spreading. All the oncologist said is that the tumors are trying to get through the skin. Yes I am frightened. I know I am at the end with no help now but yes I am scared stiff and not courageous. I live alone and although I have a wonderful family my mind goes into over thinking. I nursed my husband through terminal cancer so know what horrors to expect. I never tell anyone apart from the doctors but there is no hope. So now I have told you all and I'm sorry but had to get it out of my mind. All the best to you all who are on medication and I hope it all goes well for you.
Need to tell you.: OK I have to admit... - SHARE Metastatic ...
Need to tell you.
Hi
Whether you feel like one or not, you most definitely are an extremely courageous lady to have come this far already. Please don’t give up. It sounds like you are in a lot of discomfort with your tumour breaking through your skin but I believe other ladies here have been through similar experiences and May be able to offer advice. It also sounds like you need to see a specialist to help to treat your condition.
I’m sorry if I’m suggesting things that you’ve already tried. Please enjoy all that you can do now rather than waiting for immobility to develop. You might still be able to participate in many activities and milestones with the wonderful family of yours that you have mentioned.
Although only you can judge the implications of your cancer journey and how much you have chosen to involve those that you love, I believe it might be more beneficial to you if you do talk to some family members about your developments. They may be able to lift your spirits and assist you perhaps in some way or even stay over sometimes so your not alone.
I hope I’m not overstepping by making these suggestions but it sounds like you have been through so much and have also given so much that your close family that know you well would be happy help. Don’t shut them out to protect them.
You are an amazing woman! Please look after yourself.
I send you a big virtual hug and wish you all the best . I don’t mean to offend in anyway by anything I’ve mentioned…it’s just ,as I know myself, we often put others before ourselves.
Zoe xx
Hopefully 2022. You have been on my mind ever since you replied to my post on aromatase inhibitors. I answered you there. Now/ even more, I want to be with you tonight.
Fear in isolation feel so raw. I do hope you can have a palliative team that comforts and consults you and keeps you away from the pain more than was possible even a couple of years ago,
I respect your forthrightness and am grateful that you could speak your truth here. We know, from when we were caretakers.], how hard the road can be. Let us now be willing to receive care and consultations about the steps we can take from those who make our road easier as we have done for others. May you feel loved even through cyberspace tonight.
I'm so sorry you've run out of treatment. I hope you get to have some fun and enjoy lots of life before you get sick. Sending you a big hug and a barrel of fun to enjoy xo
Is there a local hospice who you can talk to? I was put on touch when I was first diagnosed MBC as I was in a lot of pain. They phoned regularly and sorted out pain meds for me. They were ready to offer all sorts of advice and help. Fortunately ibrance and letrozole are now working and I feel quite well. I don't know where you live but I'm sure there must be some kind of support service. Take care and please don't give up. At least try to find peace. I did meditation and a course in healing skills for health and these helped me a lot in coming to terms with my body's problems and my wellbeing. Love Carolyn x
I'm sad to hear this, hope you will indeed seek palliative care, and hospice when you need it. Meantime, I hope you can savor every positive thing you can do now. "One day at a time!" Does your insurance plan include phone support? The monthly support call I receive from a compassionate nurse has helped me tremendously! Maybe, living alone, you can get someone to call or visit once or week? Even a family member who can encourage you?
Please go get a second opinion!!!! I had the cancer break through my skin it was never painful . Very very itchy but no pain. Im thinking your doctor may be attributing everything to your cancer . We as cancer patients tend to associate everything to our cancer maybe this doctor has fallen into the same trap. Get a second opinion it sure can't hurt.
Good morning,I’m adding you to my prayer list. This thing that we live with it often tough to accept and we hold things in to keep from upsetting others. I’m glad you were able to get it off your chest. However, don’t give up. I’m praying for healing, comfort and peace that passes all understanding for you.
Hi, I went through the exact same thing recently and I know exactly how you’re feeling. After 2nd line of treatment ran its course a few months ago, I noticed a tiny red spot on the same breast I already had a mass that was growing again on, and I immediately knew it wasn’t good. It quickly blew up to about the same size as the other one, and since I’ve had it break the skin before, I knew what was going to happen if I didn’t get something to help. I had also been having increasing pain there, as well as under the arm and on my back. It eventually became unbearable.
I honestly thought I was dying (again), I started talking to my family about getting my stuff in order and having “that talk”.
About a week ago or so I went on Enhertu, which is a newer targeted IV therapy for HER2, which I also have. (Triple positive).
The day I got the IV I was in such bad pain I would’ve done anything to get rid of it. It definitely laid me out for a week but by the 4th day or so, I knew the mass(es) were shrinking (it’s close enough to the skin that I can see it). Within about 5-6 days after, the pain in my body including spine pain was reduced by 70% or more. It’s only been a week and a half and most of the pain is gone. I’m also doing low dose radiation for the mid spine, but the pain there was almost gone before my first session.
Another godsend I’ve mentioned here a couple of times is fenbendazole. There are groups online that are hugely informative and I had some success with it but had to temporarily go off of it due to liver enzymes being spiked. It doesn’t work for everyone and it’s not a cure all, but many people w late stage have reversed their cancers and it’s hugely inspiring.
Feel free to message me, I can give you more info on other things I’m currently doing or answer any qs. I don’t want to hijack this thread and make this a novel!
Hang in there!
Youve done the right thing letting this community know how you're feeling.
I empathise with you. I'm not at the end stage yet but I still withhold my inner feelings from family and others who are close, so as not to upset them.
It seems you need good palliative care which encompasses your physical need for pain control and someone to talk to.
Before the pandemic I registered with the local hospice. At the time I had brain mets (which are being controlled since having Gamma ray treatment). The hospice said I could have a visit to see how patients are looked after at/near the end but then this service was stopped due to covid.
My suggestion is to get in touch with your local hospice. Your GP can refer you. Get a list of services the hospice provides and state that you live alone. They should be involved in your palliative care.
Sorry if you've already done this.
Please keep us updated on how you're getting on.
Much love x
I am so sorry you are in this situation. You might not be ready yet to reach out to your family but considering that you live alone it might be time to reconsider. Have you been in touch with a social worker through your cancer center? I find they can be so extremely helpful in tough situations like this. Someone to talk to who really understands where you are at. They can also help you as to if/when/how to navigate talking to your family. There may be pros (and cons) that even you didn't consider yet. I've also found them to be very helpful chasing up resources/services on your behalf that they feel would be appropriate for where you are at right now. I understand these lesions can be extremely painful.
I wonder if a medical marijuana cream/oil might help? I listened to a wonderful webinar a few weeks ago all about it. There's a lot more to know about MM than I realized, in what products to choose, where to get safe products, the amounts, the blends, etc. Some people have had tremendous help with these products! One even spoke of a miracle story of remission with one of his advanced cancer clients. Not to say you can hope for that but still to help the symptoms at the very least perhaps! I know I am planning to build on this information in the event that one day I too will need some pain relief.
Look up Smithcenter.org - they have great free educational and class offerings online for anyone with cancer. One of the speakers not his webinar works at GW University . Click this link and you will see his page, and to the right a link to another podcast he spoke on about the topic. A brilliant man. gwcim.com/people/mikhail-ko...
just wanted to send you lots of love from the uk.We are all thinking of you, as you can see from the great advice above
Take care now
Clare
So sad to hear that you have come to this point. Do you have a palliative doctor to make the end a little easier ? God Bless 🙏🙏
Sister, and yesss courageous warrior I do pray for a natural treatment, a new drug, or a promising trial🙏.Please don't give up, but I do hope pray that your loved ones will stand in the gap to support any decision you who are a courageous warrior makes.🙏
keeping you in my thoughts. may you be at ease.
Just a thought
Lobular progression to stomach and colon
Need a Xeloda buddy to bounce some side effect ??’s with
PET scan results
Negative Scan results -- which is good news!
