Liver met smaller after SABR radiation BUT a tiny new liver met has shown up on mri but not visible on ct scan
I’m really upset as I’ll have to have another bloody course of SABR for that...might even have to wait till it gets bigger...wish I’d not taken hubby as he was saying things like ‘well you were ok with the last radiotherapy treatment ‘...ffs I felt crap for 3 months and just starting to feel better now
How dare he trivialise my disease...as if it’s nothing
Sorry ladies...ranting
Barb xx
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Oh Barb, I really feel so sorry for you. Pre Ibrance my liver mets were so small they could not even do a biopsy. A couple of months on Ibrance and they had increased to 26 mm. I was immediately taken offIbrance. I have read so many people say that Ibrance is not good for liver mets. I know you are not wanting to hear this but I went on to Taxol and after nine weeks the liver mets went down to 17mm. At first I went to hospital for the chemo which was a long day and a nightmare, but now as I am private and Health Care at Home come to my house and it is a doddle. I know you are so against chemo but I have my life back and a bonus is that my spine pain has completely gone. I am now at week 16 of 22/24 sessions. Please read up on Ibrance and liver mets. I met so many people at the hospital who had increase in just the liver mets on Ibrance and not the spine and lungs. Imagine the joy of your spine pain going. Is it not worth a try? xx
I think my oncologist wants me to stay on the first line of treatment which I understand so I’m seeing the radiology consultant on Monday...if it’s possible to SABR this new met...as its very small maybe I wouldn’t need such a high dose of radiation?.. I’ll ask the question
You are one strong woman!!!! Are you sure he us not saying what you want to hear. Please think carefully. What if you get rid if thislesion and in a couple of months four or five more appear? How can you stand this? Xx
This is just another bump in the road. I know many women for whom Ibrance has worked on liver mets. Since it is so tiny and can be spotted on the MRI, but not the CT scan, maybe your doctor will have not to come at it will full guns now and may have another plan in mind if it is so small that may hopefully make it go away. Prayers and hugs. Don't listen to people who say WHAT IF you get more? There is no point in telling anyone WHAT IF more appear? It does not help you to hear that. We all live on a WHAT IF. Saying prayers and wait until you talk to the doctor and it may be small enough that they do not have do what they did the last time and can just and get rid of it with a different plan. Things have got to start going your way.
You’re right...I always value your opinions...we are all unique...who knows if I stopped Ibrance the bone mets could progress...it’s the not knowing that’s the worst thing
If it works for you, stay on it. It seems that is why it is the first line of treatment bc many women do well on it for a longer period of time. Now that I am on Verzenio, studies show that it works for 16 months with falsodex before it stops. Once again, everyone is different but it is certainly a shorter amount of time than the Ibrance seems to stop working for many. I don't know why but my onco did not give me a choice of lowering the dosage and I didn't even know that was possible until I started reading forum boards where many women were put on lower doses. But I had a rough time on it. I had to be off Ibrance for almost four full months due to surgery (that in the past would easily go away with antibiotics) but because my immune system was so messed up, I had to have a really invasive surgery where they cut tunnels in my leg. The recovery period was excruciating painful and I had large holes in my leg. Recover was supposed to take one month and it wound up taking four and I had large holes in my leg and am now heavily scarred in that area. Even my onco when she saw the holes in my leg was startled and took photos (she was the one who recommended this plastic surgeon and it was not until after the surgery that I found out he had never worked on the groin area before).
So during that time, I was only getting the falsodex injections and when I was ready to go back, they did ultrasounds and then another mammogram and then more ultrasounds and I was told a cancer breast cancer tumor had form in the breast that already has a big tumor. Fortunately, it turned out to be the same type of breast cancer (I again have to have biopsies). Who knew you could get two different kinds of breast cancer in one breast? I was shocked to learn you could but it was the same makeup of what I had but my onco did not want to put me back on the Ibrance.
My last CT scan last month (Mine mets is in my lungs) show two spots on my spine. But my onco said we will wait until my next scan as they seem small and stable (not realizing that they had been reference in an earlier CT scan) so I gave her heck saying you should be telling me things like this. So she said the spots seems stable so we are going to wait until my next CT scan to see if they have changed.
So hopefully, this will be something that they can stop and not have you go through the heavy duty treatment as I know you have been through enough. I feel for you bc I know you suffer from pain. Thankfully, I don't. I think that is hard enough to deal with.
I was only trying to help,not be negative. Barb has been in so much pain I wanted to try and make it better. I would never knowingly be negative about anybody.
I'm sorry the Ibrance did not work for you, but I know one woman from another forum board (who I had gotten friendly with) who has liver mets and she has been stable for almost three and a half years on Ibrance (125 mgs.) with falsodex. (This was after having cancer and going through mastectomy, chemo, radiation, etc. and then 15 years later it came back into her liver. She has not had to change her line of treatment and God Bless her she still works full-time as a school teacher and helps run the family cattle farm in South Dakota. Other women on other forum boards that it is working fine for.
So like other medications, some work better on other people than others. I only lasted on Ibrance for 3 cycles and had to get off (not due to progression but bc of another situation) and I am now on Verzenio with falsodex injections.
So it does work for some women. We are all so different so that what works or does not work is an individual case by case basis. Sorry, it did not work for you but that does not mean it will not work for another woman.
I’m so sorry Barb. I’m sure those weren’t the results you hoped for. Has your oncologist discussed with you the options you have to tackle this unwanted new liver met?
And the reason I like this forum is that we all totally get each other’s feelings. Sometimes our own family can’t understand what can set us off. The other day, my sister told me that 2 colleagues from her previous job were diagnosed with stomach cancer and some other cancer. I didn’t pay much attention to what she was saying because 1. I don’t know those people and 2. I don’t want to hear about other people’s cancer. I have enough of my own!
I know what you mean about hearing about other people's cancer! Perhaps people think because we are in the "cancer club" we like to discuss cancer all the time! Another thing that gets me is when someone wants to talk to me about mammograms. A friend was sitting in the waiting room for her mammogram the same day as me (when this whole thing kicked off!) and hers ended up being negative, while mine needed further investigation. After my diagnosis she wanted to talk about her mammogram anxiety and how her daughter might possibly have breast cancer (she doesn't), but in the end I had to tell her that I was not the right person to talk to about that. I tested positive and didn't want to go through the trauma of recounting everything I went through. Sometimes people don't get that because we might be chirpy and getting on with our lives, but the trauma lives on.
Thank you, Barb. We have feelings, so those should be respected. But sometimes it seems that we should be the "experts" on cancer. We have the inside know-how, but I would prefer people not to ask me too many questions about my health or some random person's experience with cancer, comparing it with mine (one of my pet peeves). Don't you just hate it when you mention what you have been through and someone pipes up with how their sister-in-law's brother's cousin is going through cancer as well?
I so agree. My friend spent 3 hours on the phone talking about how her nephew might have cancer and going through all the scenarios. I held on because I wanted to be supportive, but it really cost me and when I got off the phone I was exhausted and cried. It was torture. PS he didn't have cancer.
That must have been a very draining experience for you, Nancy. I would not have relished it. I would probably have had to say something, as I did to my friend. I had to tell her straight when she asked if I could handle talking about how she felt about mammograms and the possibility that her daughter might have breast cancer. I told her I couldn't and that I was the wrong person to be talking to about it. My friend's mammogram came back negative and her daughter didn't have breast cancer, so they were both in the clear. I just wish we could be too.
Sophie, you are so clear-eyed and on point. I'm afraid I am only learning later in life how to be kind but direct with people. I should have set a boundary and protected myself. And in the future, I will. You are so right, I am not the person to be having this angst with, and really, she should have known that. She is a therapist.
She's a therapist?! Surely, your friend should have understood that talking to you about this was really insensitive and dare I say it, unkind. I haven't always found it easy to set boundaries, but a friend gave me some good advice a while ago. She said that saying no to people or situations I did not want to get into was not a sign of being selfish; it's self-preservation.
So I will say no more often and take more time out for myself, because I deserve that. One example is that I refuse to be other people's taxi service (outside of my family). I need help and support, so do not feel I can take others to run errands, go to the hospital and so on. It might seem insignificant, but to me it's more than just giving someone a ride. I know people who take advantage of that kindness in others and expect much more, and I cannot give more. What energy I have I need to use on my health and in helping my family.
My husband still thinks people expect too much of me and do not spend enough time asking how I am and I told him it's because I have hair! If I was bald and looked like a skeleton I'm sure people would treat me differently!
I'm so sorry Barb! Have they not discussed alternative treatments besides the sabr? Unfortunately when we have to take good news with bad news, the bad feeling overwhelmingly takes over while others try to steer us to the good news.
Hi Barb: I’m sorry for all you are going through physically & emotionally. The dread of the SABR & your husband minimizing your 3 months of “bloody hell!” Is there a way to get a 2nd opinion on your options? I pray you find a reasonable solution that works without the intense side effects. ❤️🙏❤️
I know the results were not as good as you had hoped for, considering the difficult time you had had after the radiation , but keep doing what you’re currently doing until you know what the next step is and once you have more information from the radiology consultant . You are one of the first to have this SABR radiation on here , so there is no one who knows how it can work for you . Your Onc obviously believes it is working , to consider a further course . You’ve done really well to get to where you are now ! So don’t give up ! Keep yourself busy till your Monday meeting. Much love x
Agree on the horse! I told my oncologist that she can tell me to do anything other than give up riding. I hope you are able to keep riding as much as possible. There is something about that horsey smell, and being in the saddle, even at a walk down the road, that Pfizer should try and bottle.
I am sorry you are feeling upset over your recent results. I am happy the bone and lung mets are stable. Try to stay positive. I agree with SpiffyCJ, try to not have the bad news overshaodow the good. Praying new spot dissolves before you are scheduled for SABR. XO
Hi Barb,
Thanks for sharing your results. I'm glad that you can still have the same SABR treatment you had before for the new tumour, but I'm sorry that your husband responded the way he did. I'm sure he didn't mean to trivialise it. I get what you are saying though. I would tell him exactly how you felt after the last treatment and how it wasn't easy for you at all. He was probably scared when he heard the results and was trying to find a way to comfort you and make you feel better. Even our nearest and dearest don't always get it right, and say things that are hurtful.
When we left the building after the consultant he even said ‘well thats not too bad is it’...I could have clobbered him but I just stormed off...lives in a bloody dream world...be different if it was him
Oh, Barb! I am sorry. That was very insensitive of him. I would probably have responded with something like "It may not have been that bad for you, but it was for me". Do you think your husband is in denial?
It is hard to get friends and family who have never experienced cancer themselves to understand what we go through. For me, I know a lot of people who have had cancer, but the majority of them have put it all behind them. So when they mention what they went through it's almost like they are recounting their memories through rose-tinted glasses. I thought I understood cancer before my diagnosis, but I didn't. It's only when you have it yourself that you get it.
Rant! That was not sensitive after all the fall out from last treatment.
Ibrance does not help liver Mets:I was so anti-iv treatments but had to rethink it all after mutation results came in.
So- port under sedation next week then week later Herceptin/ perjeta. He gave me time frame now- if it doesn’t work after 3 months it’s taxol. It has become about the fight- I will do whatever I have to tho I hate it all having been an oncology nurse years ago.
Ladies here encourage me to be more open minded in their own ways and it is getting me through.
If and when the time comes it’s enough I will get there then . Not now.
I had to have heart test done because there is a risk to the heart with Herceptin. My response has been f...it. I gotta do what I gotta do.after all the damn let downs, side effects of treatments, reactions, tests, pain, the war is on.
💪💪💪🙏🏻🙏🏻🙏🏻❤️😰
Fight on Barb we are all here for you...rant rave cry whatever it takes
Francesca — only you can decide what treatment to pursue. We each react differently and respect each other’s choices. None of this is straightforward. There is no “right” answer when you’re fighting for your life. I expect in some ways your experience as an onc nurse is a mixed blessing. You know a lot and too much all at once. As I joke occasionally, denial is a much maligned coping mechanism— so long as you still see your medical provider.
Barb - thanks for the update. I’m sorry you’re frustrated with the report and your husband’s reaction. I know you’ve shared before how he can be tone deaf. That’s another wonderful thing about this board. You get to shout about how annoyed you are and we will listen and not judge. Keep that amazing British chin up!
Sorry to hear this, it must have been a blow for you. My question is this though - and I asked my own Oncologist this very question - how do they know the new tiny spot on your liver is a mets? I'm not medical and it may be a silly question but my own Onc's answer to me was "We don't know until we see how it responds to treatment". The liver has lots of fatty deposits that show up on scans? When I get my letters from hospital and they list everything in the heading, they put "probable liver metastaces" because they just don't know. Maybe it's different if it's shown up on the MRI, I don't know, but just throwing this out as a possibility and maybe a bit of hope for you? I wonder if they can see how it responds to the Ibrance before you have to endure anything more gruelling like the SABR. Just a thought. xxx
Do you think with your husband there's an element of burying his head in the sand? I know you've said before he irritates you so you tend not to take him with you; I'm the same mostly but sometimes, especially at results time, we just want someone with us don't we.
Oh Barb, I’m sorry. I agree with Sandra that you probably weren’t showing how awful the recovery from radiation can be, but it is, and it’s not something that any of us look forward to. I couldn’t even stand the smell of food during that time. Ignore your husband like I am ignoring mine right now. He’s always complaining how sleepy and tired he is and I know he doesn’t sleep well but I don’t tell him about being tired, or constipated, or hurting, I just get on with it or I’m quiet. It gets frustrating!!! I hope you don’t have to have another radiation treatment but if you have to you will and you will get through it. I’m glad the rest of your results were good. It’s that 2 steps forward, one step backwards that is hard to deal with. Hugs! Elaine
I am so sorry to hear your concerns re your scans. I have been following your posts, and am rooting for you!
To keep you company on the theme of husbands--I am newly diagnosed, so he is just figuring it out. Today I referred to myself as "stage 4" and he said, "wait, I thought you were just metastatic. I didn't realize you were stage 4!" Then looked worried. They love us. The denial comes from love, even if it is eye-roll inducing.
I’m sorry you have a new met. Our spouses don’t truly understand what we are feeling. When I was having radiation I was so nauseous that Day 3 I was hugging a garbage can and saying I can’t do this. My husband said we can do this and I lost it and yelled at him that he wasn’t doing this I was. I felt awful for doing that but radiation was the worse thing I have ever experienced. I had it in my neck/skull and my hip, both at the same time. I know this doesn’t help you but just know some of us understand ❤️
I am so sorry Barb and I totally gets you on trivialising our disease... Surely this is our prerogative and ours alone! I must I have struggled to cope with my husband recently... let's just say we prioritised treatment side effects in slightly , I am putting top of the list nausea, joint paint and loosing 1 stone and 1/5 in 4 weeks, for him it is more the down below dryness and the impact it has on our sex life ( sorry to be crude but I am so very cross too). . He even had the guts to ask why I did not mention it at my last appointment with oncologist: the one where I was told after 3 cycles that my second line of treatment was not working and disease was progressing! I told him I did not see it as appropriate considering the news that was being delivered and pointed to him he was also sitting in the room at the time and nothing stopped him for mentioning it if he was that bothered about it!
I feel like as we are all making such a strong case for being strong and positive the very least we should get from them is that they learnt to adapt to our needs and mindset...You seem to be incredibly open about your journey while remaining positive ...Your husband should raise to the challenge and support you by identifying the magnitude of what you are going through and the strength you have demonstrated... He seems very self centered and totally deprived from any emotional intelligence ( sadly quite common)... I get frustrated when their excuse is generally " I can't guess , you need to tell me"... Well actually I am not asking you to guess I am just asking you open your eyes and for once look around what you can see that doesn't be involved you! You might pick up a few pointers! ( In your case it sounds like you have been so very poorly with SABR how can he have missed that!)
I must admit in my case my salvation has been my colleagues ( well apart from kids but that's different ), they have kept me going , providing support and a caring non-judgmental ear, adapting to my mood and health ..Shows it can be done!
All the best Barb. Take care... Hope you won't be offended I shared some saucy details of my married life!😉
Haha I’m not offended at all....I don’t have a sex life and haven’t for a long time before mbc...don’t enjoy it so I’m not ‘putting up’ with discomfort to please someone else!!
I have two daughters who are absolutely supportive but I don’t like to worry them unnecessarily as they have busy lives and I don’t want to upset them although I don’t keep anything from them
Oh Barb, so sorry! I've learned that people, even our husbands or boyfriends still don't know what to say to us about our mbc.
I know you will do well with sabr this time because you won't be withdrawing from the pain killers like last time. I really think that contributed to your feeling crap.
I found that when I had radiotherapy I needed to stay very hydrated. Also, ask your onc about other things you can do to avoid the side effects.
I'm sending love and hugs to you!
Maybe your daughter can go with you instead of your husband. I don't ask my boyfriend to go with me anymore. He just can't handle it!
Sorry to hear that. I guess your hubby was trying to cheer you up a bit but not realizing it had the opposite effect. Maybe you are right, it is so small that the doctor may want to take a wait and see approach or it will be a much lower dose that you will have to take due to it being so small. I hope that is what will happen for you as I know you have been through enough. Don't assume you will have to get a whole new round, wait and see what the doctor says and maybe you will not because of the size and it not showing up on the CT scan. Prayers and hugs.
What a disappointment. My recent scans were 90% good but it's the 10% that sends us into tailspins.
My oncologist is ranked among the top 20 in the US. I know that he would take a wait and see attitude about a liver met too small to show up on the CT scan. He is as concerned about quality of life as quantity and has twice urged putting off radiation. He as right as the bone mets began to resolve slightly and were less painful.
In fact, I have a .2cm lesion in my left occipital brain lobe. It showed up on a MRI three months ago and had not changed on the recent scan so we are just letting it be. I'm not sure how often you are scanned but would you be comfortable just waiting for a few months?
Incidentally, I noticed that someone on this thread mentioned Taxol. I am in the Contessa clinical trial, testing a pill version of Taxol plus Xeloda. I've done very well. I think it is an international trial so, perhaps, it's an option. I too do not wish to do infusion chemo and so will try almost anything to keep it as the last resort.
Sorry about your hubby's insensitivity. It seems inevitable that from time to time those closest to us will say something that is annoying and upsetting as no one but one who is going through this gets it.
Sorry to read your post and hope that any potential radiation will not be as debilitating as the first time.
I’m guessing your hubby was just trying to be optimistic. Sometimes it’s the side effect of fatigue that family members assume you can shake off with a nap. I recently had an episode of utter lethargy that lasted nearly a week.
Take care and REST A LOT! You have lots of prayers coming your way! God bless you!
As always, could not have said it better! I'm not sure how to counter your husband when he trivializes or dismisses your problems, but maybe walk right past him like you don't hear him. I think retail therapy and horseback riding or day out with the girls sounds like the appropriate response.
Hi Barb
Sorry you have had such a crap time - MEN aaarrrggghhh is all I can say.
I’m really glad to hear that you are starting to feel better. You have been feeling awful for a while, and you have pushed through with your exercising. I’m certain this will help you through your next bout of treatment.
You will know in your heart what is the right thing for you.
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Liver MRI Scan results
CT Scan results - confused
Weird Scan Results
