Hi ladies
My scan has showed progression..a spot in my liver..my oncologist suggests having radiotherapy to the area..explains the rise in tumour markers!!
If the radiotherapy gets rid of it she will keep me on Ibrance and letrazole as it’s working for the bone mets..otherwise she’ll put me on Afinitor and exemastane
I really don’t want to change and wondered if any of you are on this combo..if so how have you coped with side effects
Barb xx
I am so sorry that it progressed. I had myself ready to hear mine had progressed yesterday so I realized that it will one day and that I would just take the next medicine. But I would do just as you are reach out and find the people who have had that combination. Get as much information as possible even if it means a second opinion to make sure you are going to be on the right meds. And just remember it is a.
spot not your entire liver and you are not the cancer. I hate to say this but when mine progresses I hope it will be to my liver and not my lungs or brain. I will say many prayers for you and your doctors. Keep us posted. We are all here for you
Thank you for that...I’ve calmed down a bit now...so disappointed though as I feel so well..been more active lately
Barb xx
Thinking of you Barb and sending positive thoughts and prayers.
Thank you for keeping us updated Barb. We are all here for you ...just as you are and have been every single day for us. You are always so willing to share your wisdom and humor to keep us going. My heart goes out to you and will keep sending positive vibes for radiotherapy to get rid of that nasty liver spot. Hugs Aimee
Thanks Aimee
Kind of you...I’m going on holiday soon with family to Italy so that will perk me up..I’m going to ride my horse tomorrow and put a smile on my face
I just hate telling my daughters when it’s not good news but then I can’t lie to them either...and I don’t think they’d want me to
Barb xx
I also have 2 grown daughters. It is tough to share & be mom too!#
Hi Barb,
Thanks for sharing the results of your latest scan. Even though you did not get the results you were hoping for it is good that your oncologist already has a plan of action ready for you. I hope the radiotherapy works and that the following scan will show that the spot on your liver is gone. Hopefully you can stay on your current treatment protocol. I am thinking of you.
Take care,
Sophie x
Hi Sophie
Thank you for that..it’s wait and see time again..at least the Ibrance letrazole combo controlled the bone mets and pleural effusion..guess can always be worse
Barb xx
You're welcome, Barb. Have you thought anymore about the COC protocol? One of my concerns was interactions with Letrozole, Zoladex and Zometa, but there are no problems. So I decided to go ahead.
Sophie x
Hi Sophie
Yes...I sent copies of my medical records to them and I’m waiting for a copy of today’s report then I think I’ll sort out an appointment and see what they say..nothing to lose...but I’ll just maybe wait until I know if I’m going to have to change my drugs..dithering over it as I’m wary as you were of drug interactions
How are you feeling on these off label drugs?.. I wonder if there are any other ladies doing the same
What did you think of Jane McLellands book?
Barb xx
Hi Barb,
That is probably a good idea. It took me a while to make the decision, so I would say think it all through, talk to your GP, oncology team (I emailed my oncologist) and then see what you come back with. I didn't want my conventional treatment to be affected, so when I found out that the COC drugs are synergistic I was happy to add them. I am currently taking 14 tablets each day, but I will probably add more after I have seen Dr Callebout on the 22nd.
I had my initial consultation with Dr Mazibuko. Before he entered private practice he was an NHS doctor. I felt comfortable with him and he answered all my questions. I feel good on the drugs. I felt tired earlier, but I had a very busy work day and it wasn't ideal in today's weather! I lay down for a bit and then I quickly bounced back with lots of energy.
I have nearly finished Jane's book. Then I will move ahead with the advice in the book too.
Sophie x
Interesting to hear from someone who actually had a consultation with these people and you were obviously impressed by their professionalism
I found the layout of that book confusing and I have medical knowledge so how some people make sense of it I don’t know..maybe it’s just me expecting something different
Barb xx
Morning Barb,
How are you feeling today? I have been thinking about you.
I am happy with how things are going so far with the COC protocol. I will compare my pathology and radiology results with previous results and see how things are going. I'm having a blood test tomorrow and I'll be getting my radiology results on the 20th.
I can't say that I understand everything in Jane McLelland's book, but I get the gist of it. That's why it has taken me so long to read it! I am going through it very slowly and taking notes. It makes sense to me to view cancer as a metabolic disease, because tumour cells have to feed from something to grow. The thing is, many people who have cured themselves of their cancer using alternative therapies are often viewed as medical miracles and exceptions to the rule. But why should it be that way? I feel that the answers are out there, but conventional treatment alone will not be enough for us at our stage. That's why I am combining different approaches. I will not give up my oncologist's treatment plan for me, but will continue to read, research and add more to my arsenal as I learn more about what I need to do.
Sophie ❤
Morning Sophie
Surprisingly I slept ok last night but had a few tears when I woke..however I’ve put on some make up and going to my yoga class in an hour so mustn’t cry or my mascara will smudge!!
I think I’ll make an appointment at COC anyway and they can look at my current and potential drug change as I need to be reassured that their drugs are synergic with whichever ones I’ll be taking...the way I feel at the moment is that I want to be proactive instead of feeling helpless and passive...I’m a bit like you in that respect
It’s so sweet of you to think of me and I do appreciate it
All the best to you
Barb xx
Hi Barb,
I'm glad you slept well. You need to keep your strength up as you prepare to move ahead with your treatment.
Keep me posted on how things go with the COC.
Sophie ❤
I’ve just emailed them to ask if I ought to wait till after this next treatment plan...they replied straight away and said I can book ASAP..however I’ll wait till I get the appointment from radiologist so can sort my diary..on holiday at the end of May so there’s a lot going on this month
Barb xx
I hope it all works out for you, Barb. There are a lot of different treatment options out there for us, so don't give up hope! I am confident that the COC protocol will work. I'll keep you posted on how I am getting on with it too.
Sophie x
Thank you Sophie..
Barb xx
Hi Barb, my husband thought this site was making me sadder so I’ve not been here for a few weeks. I just wanted to say that I had a new spot on my liver and they were worried my drugs weren’t working but in my latest scan all x3 spots are completely gone so you might be okay on the Ibrance. Also I remember someone on here saying you can take a break and it will work again and not to be too quick to change combinations as you can’t go back x
I'm sorry you haven't got the results you were hoping for. This disease is always full of nasty little surprises but hopefully a spot of radiation will sort it. You have been doing so well don't let it knock you back. You are in good hands, your oncologist seems to be listening to you and seems to be on top of it.
Julie x
Hi Julie
Yes she does seem to be up to date with treatments and so on
I’m still dithering about going to the COC in London for another opinion regarding off label drugs
Barb xx
From what you've said it sounds like you have a good relationship with your oncologist and she seems to be on top of things. Have you talked it through with her? What's her opinion? Are off label drugs likely to interfere with the prescription ones? You could always have the consultation and then decide whether it makes sense to you. I'm assuming that you would remain on conventional therapy.
Probably not a good time to be making big decisions, give yourself a bit of time to let the results settle. I know when I found another breast lump a few weeks ago I didn't do much straight thinking for a few days. Eventually I decided it's a set back but not a disaster, but took me a few days to get there.
Julie x
Julie you’re so right...I shouldn’t be making decisions just yet
I did mention the off label drugs a while ago especially the Metformin which has had some research...she knew of this research but her comment was...if it was that good we would be prescribing it now....so I guess she wasn’t too impressed but I haven’t got the time to wait and see if these off label drugs get approved..could take many years
Barb xx
Thank you Sandra
I’m going to carry on as usual..yoga in the morning and horse therapy in the afternoon..just thank my lucky stars I don’t have to work!
All the best
Barb xx
Barb - I share your disappointment. You are a blessing to us on this site and deserve better. Please know many of us are wishing better days for you.
Oh Barb so sorry to hear about your results! But your onc certainly has a plan for you.
Love and hugs,
Marianne
Oh Barb, I’m sorry! You had just got to the point of acceptance and here something else gets thrown at you. I have no knowledge of the other drugs but I just wanted to chime in with my virtual hugs. Elaine
I’m so sorry to hear this. I hope the radiation can help the new spot. Holding you in my thoughts. We are here whenever you need to talk.
Hi Barb. When our markers go up, we fear the worst but hope for the best. Your comment about sharing the bad news with your daughters struck a chord with me. I believe I can take the bad news better than my children can and I feel terrible breaking any bad news to my daughters too. What markers went up for you? Did the markers go up drastically or were they in small increments? I hope your oncologist finds the perfect solution to your case. Prayers for you🙏
The markers have slowly risen since October but scans were stable until this one 2 months later from the last one
So the rise does have significance in my case ...they’re the CEA and another one which I’ve just forgotten!
Thanks for your reply
Barb xx
Sorry Barb to here about your progression. I have been on afinitor and exemestane since November. It did not work for me.Hopefully these drugs will be different for you. I became allergic to the afinitor so I had to stop.
Dearest Barb, So sorry to read your post. Please know that loving prayers are on your way from many. I had just found it so inspiring that you were back on your horse and pray that a change in protocol doesn’t slow you down! God bless you!! ❤️🙏🏻❤️🙏🏻
Dear Barb, so sorry to hear your news. Your oncologist seems to be on the ball so I am sure she will kick this problem into the grass. I love reading your posts. They have become more positive and always make me smile......keep at it. Fayx
Barb, l am so disappointed about your news . Glad you went to yoga and will be riding Bugsy. Let us know how things work out with the treatment and the DOC too. Have a wonderful time in Italy, happy for you - who in your family are going with You?
Wishing you the best, always. Mary
Both of my daughters..one with her hubby the other with her hubby to be ..they get married in September..oh and my hubby!!
I’m tired after yoga but will ride later when the weather improves..been raining
Barb xx
Hi Barb,
Sorry to hear about your latest scan. Just want you to know I am thinking of you. I know it is not easy when we encounter bumps in the road, but your oncologist already has a course of action. This too shall pass. It is just unfortunate that you have to go through it. Hopefully soon enough you can put this behind you and breathe again! I am so happy to hear that you are going away. Which part of Italy? I have been there a few times. It is so beautiful! Enjoy every moment! Xoxo
Thank you for your support
We’re staying in the bay of Naples not far from Sorrento...rented a villa as there are 6 of us going
Italy is my favourite place..been lots of times
Barb XX
Hi Barb,
Sorry to hear about your results, it is heartbreaking g to hear of new growth. My thoughts are with you as you work through some new decisions.
My first scans this past March after starting Ibrance and Letrozole in Dec 2018 showed new bone mets and increase in size of original bone mets. This was extremely discouraging and heartbreaking as I too was feeling better and was expecting better news. That was from the bone scan, the CT scan a week later showed that the large tumours under my arm and the lymph node growth had almost completely disappeared. This was exciting good news. The oncologist kept me on Ibrance and Letrozole, she just changed me from zometa to xgeva. I go today for my first xgeva injection at my monthly check up. I also had 5 rounds of radiation on 2 of the larger bone mets on my spine. I will have scans again in July and I am hoping that this will give better results overall.
I wish you all the best.
Lisa
Yes it’s very discouraging..like you I was feeling much better and assumed the scan would be good...anyway at least there’s a plan
I do hope the radio ablation?? works and I can stay on Ibrance and letrazole as I’m nervous of new medication..mainly side effects..I cope quite well on the current combo
All the best to you
Barb xx
I am on Ibrance and Letrozole. Although I suffer from low counts and some fatigue, I have managed well. My oncologist has put me on a new multi vitamin and I have seen a world of difference in my energy level. I have monthly Zometa infusions. Keep fighting and good luck!
Could you tell us please which multi vitamin you are taking? Thank you.
Thera Tabs - by prescription. I also take Iron, Calcium with D and B12.
Sorry to hear this Barb. I will be looking forwad to hear how well you do with the new meds. Have you tried taking milk thistle for your liver? I a a big believer in standardized milk thistle.
Hi Barb,
Sorry to hear you had some progression. It seems that your onc has a plan of action ready. It is good that you have the option of having radio and hopefully will get rid of it without changing your treatment. There is COC as well to try. I have not contacted them myself but I might consider it in the near future.
All the best,
Eva
I am sorry to hear about your set back however you are alive. We must focus on each new day that we have and enjoy each moment. It is an awful disease but there are worse things in life. People are killed daily in accidents with no chance to extend their life. In the states yesterday an 18 year-old boy was shot at school by another student and died. He had only three more days until graduation from high school. There was nothing for him to extend his life. We need to be grateful for what is available for us.
Sending 🙏 to you.
Mimi
I too have liver mets. My tumor markers jumped up 25 points and scan showed the tumor on my liver. I have recently had 5 rounds of cyberknife radiation and my onc started me on Verzenio pills and Faslodex injections. I also get Xjeva injections for my bones. Only side effect from Verzenio is GI problems- mild diarrhea and lower abdominal cramps. It hasn’t negatively affected my lifestyle. Still work out every day and appetite is good. Is cyberknife available in your area? It’s a targeted radiation that avoids surrounding organs and is extremely accurate. Best of luck to you. Keep us informed of your progress.
You can Copy and Paste that reply when and if I get the Change-of-Meds-Notification.
I'm sorry to hear you have to endure more crap Barb. I guess its true, What doesn't kill us makes us Stronger !
Hi Barb
So sorry it’s progressed. It’s so frustrating to be on this roller coaster ride. I’m glad your Onc. has a plan. I will be sending prayers and good vibes that you can stay on your meds and they can zap the damn bug off your liver. I hope your yoga class lifted your spirits. Enjoy your horse this afternoon. I have a little 7 lb maltipoo who is always by my side. He makes everything better. Sending hugs xo
Robin
Hi Robin
Thanks for that..yes yoga was good..rained this afternoon so I put Bugsy on a lunge line instead of riding..too miserable (the weather!) so we had some time together
My dressage instructor is called Robyn but spelt differently..unusual name
Barb xx
Glad yoga was good! :). My name comes from the name Robert. It can be a boy or girls name. I didn’t like it when I was young but I like it now lol The meaning is “Of shining fame” although I’m still waiting for that! Funnier, my H name is Bob “Robert” lol it works. Hope the sun shines soon for you.
xo
Lord have Mercy girl, you have an army of MBC cheerleaders!
I know you got this Barb, look at it as an opportunity to learn more, be flexible and open to discover the healing remedy specifically designed to target this tiny new liver spot to be gone!
Continue to build on all your passions with love.
Tears are as healing as laughter as they both nurture your heart to expand and grow thru self-love. xx
Your allowed to be upset Barb that's part of taking care of yourself.
For example, I'm sure you remember as a Mom getting upset when someone was not kind to your daughters when they were under your wise and nurturing care.
It's some what similar for when life presents a health crisis that appears to be an unsurmountable mountain. We're upset, and for a moment when in shock we may feel helpless because that was not kind for life to challenge us suddenly by something we "fear" aka "false evidence appearing real".
It's all in how we approach getting to the other side of the mountain, that sudden huge life crisis blocking our path.
However, as you know, taking time to thoughtfully design the appropriate attitude and plan needed for getting to the other side of an obstacle is not about moving on.
Remember, life is a journey with lessons all along the way. Some are lessons not to repeat because the pain was too great and some are important lessons to embrace for understanding we are all here with valuable gifts and a legacy believe or not that's vital to share with all of those that will follow us.
You have many gifts Barb! Just being you and sharing them freely; your honesty is one of many, when you share the good, the not so good and the really not so good. LOL
For someone like you, who has experienced and felt the power of a horse underneath you, by golly that is an awesome power to harness. Your ability to harness a power like that instills in you an innate talent to incorporate that courage and trust for harnessing any life crisis.
I'm looking forward to this next chapter of your life and what treatments you discover for your own healing.
Oh shoot - well i really want to say the other s word but I'll be polite. It sounds like since its just a spot maybe the radiotherapy will take care of it. I was on Affinitor, exemestane and one other drug similar to ibrance in a trial and the side effects of the combination were to much for me. The one side effect that was from the Affinitor was bad headaches. But of course everyone is different.
Hope things work out.
Kim
Barb
Sorry about the progression. I know few who did the radiotherapy and had excellent results. You will be in my prayers sending hugs and healing light.
Love
Frances
It’s called radio frequency ablation which apparently uses heat to kill the cancer...it may not be possible to do it though because of the site of the tumour
Wish me luck
Barb xx
Barb hope you are feeling better! I have been thinking about you.
Sounds like your treatment will be non invasive and will do the trick.
I will pray for positive results for you!
Italy will be a perfect place to escape from all this nonsense! Damn cancer!
Love,
Marianne
Hi Marianne
Thanks for thinking of me...have just ridden Bugsy with my friend Michelle on her horse and we had a lovely ride as it’s stopped raining and the suns trying to put in an appearance
I have an appointment next Tuesday to see the radiologist about proposed treatment...I just hope it can be done otherwise change in treatments will be next
Anyway I’ll know more after I’ve seen him
Barb xx
Hi Barb,
I am sad to hear about your progression. You seem to be very strong and you will get through this. Have fun in Italy, I loved Sorrento and that whole area. I will be thinking and praying for you.
Hugs,
Robin🌷
You are a warrior 😍 you can do 🌹❤️
So sorry to read that you have a progression. Thinking if you x
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Good scan results today ! 🙂
