Thanks for all your lovely comments on my last post, they really helped me get through the weekend.
As expected it wasn’t good news. Largest mass in liver has gone from 2.8cm to 3.5cm and all the smaller ones have also increased in size but bones are still stable. He is now going to do a liver biopsy to check the status of the cancer. There are a few options he can offer but depends on status of cancer. Feeling a bit washed out.
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Julie2233
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Oh Julie I’m sorry you are going through a rough time. I know it’s the uncertainty and the waiting that is so unsettling. It sounds like you have a great medical team caring for you. There are many new treatments out there that I know will knock those liver Mets on their butt! I’m send you a virtual hug and healing thoughts.
We don’t have as many options as you do but there are still options and I’ll be happier after the biopsy knowing they are giving me treatment relevant to my cancer. My oncologist has no bedside manner but I trust him and we had a good discussion about options this morning and I came out feeling brighter than I went in.
Julie, so sorry you have another mountain to climb. Thank goodness you have a team around that seems to know how to knock this cancer b....r. Virtual hugs to you.Fayx
Thanks Fay, yes I’m now pleased I changed to this oncologist, he seems to know what he’s doing despite his lack of communication skills.
Incidentally do you know that the haven is continuing its mbc support group through zoom meetings? Just a thought 😊
Hi Julie,
I'm sorry to hear that you did not receive the news you were hoping for. It sounds like your oncologist is right on the ball with this and already has a treatment plan for you. I hope you can quickly get going with that, as I'm sure waiting to start any new treatment is stressful for you.
Thanks Sophie, I feel a lot better now I’ve spoken to him. It wasn’t the news I was hoping for but I’m so relieved that he’s agreed to do a liver biopsy so we know what type of cancer we are treating. Onward and upwards 😊
You're welcome, Julie. I'm glad you are feeling better and that your oncologist has been able to reassure you. I hope the liver biopsy goes well for you. I've had four biopsies since 2018.
Hi Julie: Sorry to hear of the progression. Have you ever tried the Joe Tippens protocol with your traditional treatment? It has worked for thousands of cancer patients. Including me. You may want to check out his story:
I haven’t but I have looked into it - my sister-in-law is a dog breeder so it wouldn’t be hard to get dog wormer. I spoke to my oncologist about it and his recommendation was that it could interfere with the chemo I’m on. But I am now seriously considering it.
I was diagnosed with liver mets this year. Getting chemo every other week. They are too small to zap. I know you must feel like you were kicked in the gut. There are a lot of treatment options. Sending a big hug. Let us know what the plan is. Take a deep breath. You can do this ❤️
Thank you 😊 yes a deep breath works wonders. I am relieved that it hasn’t spread beyond the liver and the oncologist doesn’t think it’s anywhere that it will cause too many problems, so that’s a relief 😊
Julie...I’m in a similar situation and it’s bloody horrible...you’ve probably read my posts that I’m having faslodex injections and just keeping my fingers crossed they help
It’s the not knowing what the next treatment will do...the good part is that your bones are stable so concentrate on that...ladies on here have talked about how resilient the liver is and can recover...focus on that
I did really well on faslodex, hope you do too. Are you having it with ibrance? Nhs will only allow one course of treatment with ibrance and once you come off it you can’t restart despite evidence that it becomes effective again after a break.
I’m just so happy to be offered a liver biopsy, I asked for one last September when the oncologist suggested that the cancer’s profile could have altered, but was refused.
I still feel well and hoping that the dose of radiation will get rid of the niggling pain in my hip and back. I also need to get more active, as I think that might be part of the problem. 😊
I'm sorry Julie, it's so hard to get news like this. I'm in the liver mets club too. I'd been on Xeloda but when my December scan showed that my individual liver mets had become "areas of metastatic disease" I thought that was it. I think my oncologist was stunned too. Luckily the Abraxane seems to be beating it back. I think you are wise to get a biopsy, just in case the cancer there is a different type that may offer more options. It helped me to actually see the CT scan too and see just how huge the liver is, and that along with the mets there were still large areas that looked healthy. And thank goodness your bone mets are stable.
Hope you can keep biking. Thanks so much for the update.
Thanks 😊 it’s good to know I’m not alone. Onc is doubtful that abraxane will work for me but has offered me an alternative if it is still hormone positive. I’m dreading the biopsy but hoping it will give useful information at the same time 😊
Thanks Sandra 😊 yes, I feel a lot happier now and trying to take the positives. It’s still just in the liver and bones. I wear a Fitbit and know I need more exercise so that’s the new plan to get my fitness back. Working at home is too much of an excuse not to leave the desk, but I’m going to start walking again at lunchtime with at least one of the dogs instead of leaving it to my daughter. And get out on the bike, I feel so much better after a decent ride. 😊 I have a plan and I’m going to move forward!
Thank you, I don’t know what I’d do without this forum and it’s support 😊
Thinking of you Julie and just hope your options give you more positive thoughts. Best wishes
Cheryl
I wish I knew the proper words. I hope your oncologist comes back with numerous options for you. I understand how progression can make you feel. I’m here if you need to vent. Please let us know what treatment you will go with. ❤️
Hey Julie. I'm traveling down the same road as you. My biopsy is tomorrow, and I'm a wreck. Quietly, of course. I wouldn't want anyone to know!
This has sent me into a downward spiral. I spent all last week working on a will and final instructions. I'm a ridiculous pessimist, and I need to do better.
I will post after the procedure and consult. Feel free to reach out if you have any specific questions. My fingers are crossed for you!!
Hi Andi, hope its all gone well / will go well for you. If it’s not too bad please tell me what to expect, if it’s not good please don’t 😁
I did my will a couple of years ago and it was quite a funny experience. I hadn’t recognised the solicitor but she knew me as I used to clerk the local planning committee and she had clients applications before it. She started talking about long term plans and I had to tell her that we also needed provision for just in case one of us departed this life in the next couple of years. She looked shocked and I explained about having mbc and she burst into tears! I had to find her a box of tissues!
I’ve lost 3 friends unexpectedly in the last couple of months, having your will sorted is something everyone should do, no one knows what is going to happen.
We have to live with a constant reminder of our mortality which our peers don’t get, but hopefully it’s going to be a long time for both of us before we actually have to come face to face with it.
Hey Julie. I am writing this from recovery. The only bad part was from the blood draw/IV. For some reason my veins have retreated and my blood insists on hemolyzing. A sweet phlebotomist took pity on me and had the doctor give me some oral versed so i could tolerate multiple attempts. Admittedly, I almost left. After that, I felt nothing until it was over. I was told it was in an extremely challenging spot, so i was really worried. I know I'm still high from the drugs, but no pain and I can eat whatever I want tonight@
So glad it's over. Consult with the doctor tomorrow. If you have specific questions. Don't hesitate to reach out.
Thank you! I really appreciate you writing this from the recovery room! I have dreadful veins and they always struggle to cannulate me. But having read what you’ve written I feel so much more confident about having the procedure 😊 thank you and hope you are recovering well today xx
You are in my thoughts. Here's a great big hug , and some of my strength too. Know that you are not alone. While this common enemy is trying its best to take everything out of us, we stand together, strong in spirit, trying to fight it. This is what I try to hold onto every day.
So sorry to read about the progression but it’s encouraging bones are still stable. Pleased also to read your oncologist has treatment plans in mind and hope so much these will be successful.
Julie, I am so sorry you didn't get the news we were hoping for. Your plan to start exercising and biking more sounds good. It will be a relief to you to get the biopsy and results so that you can start treatment. You have a whole team with you. Blessings Hannah
When I started this second cancer journey my big problem was my spine with tiny liver and tiny lung tumours. Unfortunately
Now my biggest worry is my liver as lung and spine are really doing well. However taxol really reduced My liver mets and at my last Scan in July the liver mets had really shrunk. Having another scan next week so hope for good news. Good treatments out there for liver mets so try not to worry x
Oncologist thinks because I had progression on cabaziltaxel the other taxels probably won’t work either which was a bit of a blow. He has said there are other options depending on the outcome of the biopsy.
So sorry to hear this Julie.....hope the biopsy goes well and they will find the best treatment for you. You are in my thoughts and prayers and have an amazing support group here to support you💕
Have you tried turkey tail mushroom? Researcher Paul Stamets' mother was stage 4 bc with 3 mo. prognosis with tumors in her liver. She took 8 grams of turkey tail capsules during her treatment and is now cancer free. His research is extensive. The supplement is safe with most chemos. Host Defense brand is on Amazon. Give it a try. Hugs and kisses! Conventional medicine needs to change.
I will, I always do, that’s just me. I rang a friend with the news, he knew I was expecting bad news. At the end of the conversation, he commented that he didn’t know how I did it as I’d given him bad news but left him feeling completely reassured that everything was ok 😊
I wore heels to the hospital yesterday, I love my heels and have always refused to give them up but I’d forgotten about the side effects of xeloda and now have huge blisters on the soles of my feet so don’t think I will be doing much exercise for the next few days! But I’m still not giving up my heels!!
I’m sorry Julie, sending you hugs. Bad news, waiting, and a new treatment is always such a dark and wavery sort of time period. I don’t have a better way to describe it. Until we get on that new regime and know that we are working in a constructive direction it’s so hard to be positive. You are up, you are down, you talk yourself into be positive, you shed a few tears in the shower and then come out and put on a positive face. I wish we could all reach through the screen and hold hands! Elaine
That is such a good description of how waiting feels. It would be wonderful to hold hands but the understanding on this group is definitely a huge support and almost as good as a hug 🙂 xx
I wish it had been better news and it’s ok to feel down right now. Your oncologist will find a new treatment plan and then you will back fighting this crappy disease. ❤️ -Sarah
I’ve moved my head to it could have been worse mode. I’m concentrating on it being stable in the bones and no spread elsewhere yet 😊 I’ve got my fingers crossed that the biopsy will put us on the right track 😊
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