I've just got back from seeing my oncologist to get my latest scan results, and the good news is that the bone mets are stable but he thinks there may be a nodule on my liver. The scan has gone back to the radiologist for further intereptation but the oncologist wasn't hopeful.
It looks like I will be sent for a MRI and if it is cancer he says that I will be taken off the faslodex and ibrance and given intravenous taxol. He said that I wouldn't be offered radiation.
I just wanted to ask if this is usual? I was surprised that he was going straight to intravenous chemo, I'd be interested in hearing what treatment any of you in this situation have been offered.
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Julie2233
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Hi Julie, I have mets in spine, liver, and lungs. I only had four rounds of Ibrance before I was put on Taxol. I was annoyed that I was not offered anything else when liver mets got worse. I have my CT and MRI scans in a couple of weeks as today I had my 8th weekly Taxol. I am very nervous, but have to say I have found Taxol, very doable. Apart from having to go to hospital every week and have a Picc line, it is fine. No hair of course, but who cares. I have been told I have a lovely shaped head 😁. Where are you by the way . X
I kept my wigs too, but can’t be bothered so much now. I am going out for dinner tomorrow night with
friends, so will probably wear a wig. I am actually in Bangor Co Down, but my husband is welsh from Swansea, though he grew up in Yorkshire. Best wishes Ruth x
😊 I've never been to Bangor, Co Down but I know Swansea well, I lived just down the coast in llantwit major and Cardiff for a while, and my dad's family is from Yorkshire, both lovely places.
Was it explained to you why you can’t have radiotherapy?
My liver nodule was in a difficult place to treat...close to my small intestine and gall bladder but they did SABR radiotherapy which is very precise and only targets the nodule without destroying much of the surrounding area...I did have to travel to Birmingham initially to have a 4D scan and a cast made of me in order to keep me still and in the same position...maybe ask if you can be referred to another centre for this if it’s possible
It’s no picnic though...I feel crap after it but at least I can stay on the same meds a bit longer
I did say to my oncologist that I didn’t want chemo...I don’t think I want radiotherapy again either
Yes, I thought you'd had radiotherapy. The oncologist dismissed it as being of no use as he said that if it's in the liver they need to treat the whole body, but if the bone mets are stable that doesn't feel right to me. Which is why I asked my question to see if it's just the NHS saving money or whether it's the usual protocol.
Well that’s scared me now if it’s no good for liver mets...that’s why I was pleased not to have chemo as the radiologist seems positive it will work☹️...won’t know till 3 month scan though
No, please don't let it scare you! You are being treated privately and will be getting the best treatment! I'm sure your treatment is the one that makes more sense, it's probably just not cost effective for the nhs.
I really don't want intravenous chemo again, it had to be stopped early last time as it nearly killed me.
I’m positive this is available on the nhs...ask the question...it’s ridiculous if it’s not available to all
Makes me mad when the nhs pays for tattoo removal and ivf treatments in some areas and stuff like varicose vein removal when it’s for cosmetic reasons and not detrimental to health
You aren't ranting, your are spot on. The trouble is it's not a National Health Service, it's a regional one with treatment depending on what your health authority will finance.
Find out about going somewhere else or ask about oral chemo...your quality of life is more important...be pushy and assertive..not easy I know but when I was a practising dentist it was always the patients who made a ‘nuisance’ of themselves that got what they wanted!!.. I don’t mean that in a derogatory way but you know what I’m saying!!... don’t be passive
Anyway it might not be anything to worry over...let’s hope it’s benign
I hate my life as well and sometimes I feel like just giving up on the whole thing but I’m still battling on
I’ve a reflexology treatment this morning and then going up to see my horse later...just having something to do each day helps but it’s bloody hard
Yes, I've got a lot more assertive than I ever used to be and thanks to all these replies I now have a list of questions to go back to the oncologist with Jx
Hi Barb. Are you private or NHS? I dont believe for one minute you'd have been given the radiotherapy if it was no use for liver mets. I think its more likely to be the NHS post code lottery we face and poor Julie is a victim of this. X
I’m private due to a Bupa family policy my husband got through his job about 30 years ago...when that job finished we just kept the policy going
When I had my initial cancer in 1994 the surgery etc was all done at a private hospital and I remember my oncologist telling me at that time that nhs and private treatment was exactly the same...just better food at the private hospital and you could order wine with your dinner!!
It appears that times have changed and it’s s postcode lottery...disgraceful in my opinion...I’m lucky to have kept the old policy because I doubt I would be able to pay privately..the Ibrance alone is nearly £4000 a month!!
My NHS breast surgeon told me that there was no point in using my bupa cover as NHS and private patients received exactly the same treatment, that was in 2016. When I was driven to use the private cover in 2018 I discovered they were worlds apart.
I totally agree Barb. Not just trivial stuff either, controversial as this may sound, I don't agree with a lot of the treatments provided for self-inflicted problems too. I know it's not always straightforward, but a lot of the time it is!! I don't suppose that's very politically correct of me but just my honest opinion.
Yes I know what you’re saying ...people don’t take care of their health and expect the nhs to pick up the pieces when their self inflicted ailments start to cause them problems
In process of changing to private as my new oncologist also does work in private sector. He is putting me on a newer version of Taxol (nab taxol) and it does not need all the pre meds you need with Taxol. Also putting me Avastin as he says the NHS won't fund that either. Also I got an appointment with respiratory specialist within days and was told it would be a one year wait on NHS. Same with spine surgeon, saw him in a few days and would have had to wait months on. NHS. The definitely is a difference. have my 9 week CT scan for my liver and lungs, and my MRI for my spine. Very nervous about the results.
You are absolutely right, it could be benign. This scan has also picked up the breast lump as suspicious, which I was told was a fatty lump only a couple of weeks ago.
The oncologist said that the next step would be taxol and didn't discuss anything else.
The scan has been referred back to the radiologist for more interpretation and the MRI should be done in the next few weeks. It will be good to go back with questions about possible alternative treatments.
My cancer progressed to my liver while I was on the Ibrance/Faslodex combination. I am now taking Xeloda (oral chemo). I take 3,000mg a day - 7 days on, 7 days off. I started in mid-February. Had a PTscan in May. Results were good. Side effects are not bad. There are other women on this site who have also gone from Ibrance to Xeloda. My oncologist never discussed IV chemo with me. I didn't get a second opinion, but I believe other women on the site have. Consensus seems to be that Xeloda works well on liver mets.
Thank you, if the MRI finds it is what the oncologist thinks it is then I am definitely going to ask about xeloda. Are the side effects mild enough for you to continue working if you wanted to
I believe the most common side effect is the hand/foot syndrome, which is caused by Xeloda leaking into the capillaries of your hands and feet. I have experienced redness in my hands and the soles of my feet, but not the intensity (like the feeling of a bad sunburn). It is recommended that as a preventive measure, you should not jog or walk long distances. I have cut my daily walking from hours to two 30-minute walks. I also use a cream, Udderly Smooth Extra Care 20, on my feet at least twice a day. As far as working goes, I guess it depends on how much time you spend on your feet. I'm just not sure. I am not currently working, but am hoping to return part-time.
I wish you well. These decisions regarding treatment are tough.
Hi Julie, isn't it bloody awful? I was told at my last onc. Appt that all was stable in liver, bones, lung BUT there were 2 new nodules in the lung. Because it seems to be working I am still on palbo and letrozole. They will decide whether to change medication after the next scan which was in fact yesterday 6th August. The whole thing is a nightmare. I don't fancy chemo but the onc nurse before this hiccough said chemo would be the next step. All the best, Fay
It is bloody awful! I'm wondering why the oncologist is assuming that the cancer has become immune to hormone treatment and it's not just that it's become immune to the faslodex/ibraance. He hasn't suggested a biopsy. Another question to ask 🙂
When my liver mets progressed on Ibrance I went on Xeloda. It’s a chemo pill. You keep your hair. The only annoying side effect is your hands and feet get red and dry. It can be painful at times.
Mama always told me, the squeaky wheel gets the grease, and she was right. You have to stand up for yourself! I think like this; I am stage 4, I WILL MAKE MY CHOICES, you will not bully me into doing harm to my body because I have to live with the results of what is done, not you! The doctor prescribes the medicine, the Holy Spirit leads and guides, He alone knows what is good for me and what isn't. When I was diagnosed they said I had innumerable nodules on my lungs; chest xray yesterday said "lungs all clear", it took a few months but I knew the inflammation had been caused by vaping because I had quit for a year and then started up again, so when I did I started coughing when I'd vape, I quit again right at the time of the CT, etc. I READ about a woman who had been diagnosed with lung cancer because of innumerable nodules on her lungs that went away in a few months because she, like me, had a reaction to vaping. When I told the onc and my pcp that I thought it was from vaping they practically laughed at me, and said oh no, this is not from vaping! KNOWLEDGE is POWER and no one tells the story like those going through it! God bless you and heal us all in Jesus name, amen! <3 Xeloda sounds good btw.
Vaping is inhaling chemicals basically started with PG which is what they use to make the fog with the fog machines, a bit of flavoring and pure nicotene at various levels. Problem now is they are putting all kinds of chemicals in their vapes and sucking it down into their lungs; all kinds of stuff from CBD oil to tobacco concentrate of some sort. Hubby and I quit smoking in 2010 and I vaped for 8 years and he's been going for nine. Never hardly ever had a cold and I can take deep breaths without any wheezing; thing is, about six months ago I decided I wanted to start up again as I had quit, but this time it was giving me a cough and irritating my lungs. When the lung nodules were found on the CT as innumerable I went to reading and read about a woman who had the same nodules as me and then quit vaping and they all went away. I told my doc that I had started vaping again and that this time it was making me cough, and I told him about the woman who had nodules and then none. Long story short, they kind of disregarded it and said basically, 'no, yours is breast cancer in the lungs'. Fast forward to last chest ex-ray and I quote, 'The heart and great vessels are normal and the lungs are well expanded and
clear. The increased opacity in the right lung base is likely caused by the
patient's right breast.' I said all that to say this, it's not the vaping that is bad, it's the wrong chemicals they're using as alot of them are coming from China and we know China will use and substitute chemicals if it saves a buck! Rant over and out <grin> I know some of this I have already said, and some is new info but thing is, we can become "allergic" to something at anytime I guess as I had vaped for 8 years with no cough whatsoever then BAM! maybe we got a bottle of bad "e-juice" i.e. vaping chemicals because hubby still vaping and no cough. It is still WAY BETTER than smoking cigarettes but you have to do your homework and know that the chemicals are pure and made in U.S. labs or wherever but NOT CHINA! <3 xo God bless you and heal us all in Jesus name, amen!
Hi Julie. We have to be our own best advocates. The doctors dont know everything. Sometimes a second opinon is necessary, if possible. Faslodex and Ibrance stopped working for me so I was put on an oral pill called afinitor. It is a hormone inhibitor. Only 2 months in, but seems to be working accordingly to tumor markers. This is my third treatment plan. I also have bone Mets and nodules on the liver. I am in the States.
My tumour markers have remained in normal range since starting treatment though I'm interested to see if they have risen this month. Thank you, I'll ask about afinitor too!
I just started on the afintor- this week - ibrance failed me after 4 cycles- I pray this is the Golden ticket for a while!! Already did the xeloda!! 3 years!!
Ok! So I have been on afinitor for 7 weeks. I have been really lucky. Only side effects initially were being super cranky towards boyfriend the first week. Very out of character for me and super tired. Then by week 3 it passed. I am on 10 mg. My oncologist said it can take 3 months or more to see how afinitor is working as it has to get I to the cells and it takes time. The same day she said that she called me that night and said she k ow it was still early in the game BUT my markers had dropped about 8 points. So.....I too am hoping this is the golden ticket for me too! The faslodex shot was horrible. Getting the shot each month was so upsetting for me. I was on it for maybe 4 or 5 months. I dont miss that one. Make sure you drink a lot of water with the afinitor. Faith
I’m only starting on 5mg - I’m famous for mouth sores- they also started me on a steroid mouth wash 4 times a day for 8 weeks - so far so good- I just have bone Mets - so feel lucky
Oncologist said that radiotherapy would just target the small area where the drugs are systematic and would treat the whole body. Though from the replies on here it feels like every oncologist reasons differently.
My bone mets are stable, surely If the meds had stopped working there woukd be movement in their size
Hi Juli, how big is the nodule? It might not be related, could be fatty deposits? Ive got mets in my liver, spine, chest wall, lung and lymph nodes and on Ibrance so not so not sure why you are being changed. Sometimes I think it depends where you live. Like Barb says though, if it is cancer, query the same sort of radiotherapy that she had, Im gng to if and when there's progression with mine. Everything I learn on here I keep a separate note so that I dont forget, ready to refer to if and when I need to. Best wishes. Josie
Yes, I'd had that thought/hope. I though that especially as I have a non alcoholic fatty liver. Yes I know have lots of questions to ask when I see the oncologist again thanks to all the lovely ladies on here.
I actually had a ride out this afternoon...maybe the reflexology put me in a good place...knackered now!!
A chum was around the yard and she tacked Bugsy up for me which was great,,.he also was a well behaved boy..no bucking when we cantered!!
Miranda’s wedding is September 13th...a Friday!!.. good job we’re not superstitious,..it was a last minute booking and that’s all they had left
Because she lives in London her in/laws in Devon and we’re in Nottingham..the wedding is in the Cotswolds...sort of between them all...it’s in a lovely country barn built of Cotswold stone so very beautiful setting
Have a lovely lunch out with your friend...it’s good to get dressed up and get out...we’ve had weird weather here but today lovely..about 20 degrees with a breeze...the only thing I hate about summer riding is the flies..ugh!! But I like the heat so can’t have it both ways
I always love your posts...common sense and some humour thrown in!!
Wedding sounds wonderful, hope you post some pics! Your description of that barn sounds so beautiful and what a venue for a wedding! glad you had a good ride and I pray you feel better soon in Jesus name, amen! <3 xo
I just had scans and my bone mets have not progressed and I also have three liver mets. I had the strangest thing happen while talking to my oncologist and looking at the scans. I went off of Ibrance as I got worse on it and the Fluvestrant. Because I have read about how well Metformin starves cancer cells and because I am a borderline diabetic, I asked my primary for the Metformin. I had a skin cancer nodule on my stomach. I was scheduled to have it removed and biopsied. I had to cancel the appointment because after just a week on the Metformin the skin cancer nodule went away. While my o ncologist was showing me the liver mets and telling me he wanted to go on the Xeloda, I asked him how you can tell if a cancer cell is dying. He explained to me that the cell gets darker on the inside and then a white line is drawn around the cell. Then we talked about the Xeloda, and went back to the liver scan. He was surprised and said that one of the mets looked like it may be dying. It was dark on the inside and had just started drawing a white line around the cell. He was really surprised. I had been on the Metformin for a month at that time. I believe that it works. I don't want to go on the Xeloda, because I have had all three polio viruses, including bulbar polio. I have also developed a brain balance problem that has made my brain send mixed signals to my eyes. My eyes on their own are fine, but I developed this problem after being on the Fluvestrant and Ibrance. I am swaying while walking. A specialist told me that it is because of the polio and that the cancer medication could have caused it. I don't want to take the Xeloda because the last thing that I need is more damage caused by these drugs mixed with the damage from my polio. It terrifies me that the brain/balance issue may be permanent. I also have overly sensitive skin. There's a medical name for it, but it has about 28 letters in it. It overreacts to everything! I also am very chemical sensitive! Metformin is not harmful. In fact, it does lots of good things. It is good for the heart. It also produces the AMPK molecule that is essential for life. You also produce it when excercising. Because of the polio, I am not able to exercise. I will get scans in another month or two and am curious as to if the Metformin will get rid of the liver mets, one down? - two to go? I am only relaying what has happened to me. If you have a diabetic problem, or if you are addicted to sweets, I wonder if it would help you. Maybe it will anyway. There is a lot of encouraging news about it in the media now.
Thank you, I'm really interested in hearing about the metformin. I am at risk of type 2 diabetes as my granddad, father and brother all developed it and I am slightly overweight with a sweet tooth, though my blood sugar levels are ok at the moment.
I hope you continue to do well on the metformin, I can understand why you are reluctant to take the xeloda.
I need to let you know that my diabetic specialist who my friend/neighbor worked for told me in 1975-76 that he was going to test me for the 8-hour testing, getting me in right under the gun. He said after that that only the 3-hour glucose testing would be available and it did not pick up the borderline diabetes. Therefore you and many others may be borderline diabetics but not know it because the 3-hour testing does not pick it up. I wish you well! Thank you for your understanding. It always feels good to have someone in your corner.
I have a good friend in the states who contracted polio as a child and has now developed secondary polio. Until I started talking to my friend I never knew about the complexities or long term effects of polio. I know my friend's wife has to be very careful when taking any drugs because of the impact they have on her in ways they don't affect other people. I completely understand your reluctance to take xeloda when you are getting good results from metformin.
I will go back to my gp and ask. I've had the fasting glucose check and the blood tests that looks at blood sugar for the previous 3 months, and both were clear. But I will ask about the 8 hr test you mention. Thanks 😊
I had the same thing happen. My next treatment was Xeloda. I would ask as it’s a chemo pill with lots of different dosing choices. It metabolizes in the liver and is supposed to be effective. My last scan showed reduction in my liver mets and bone mets were stable. 💕
That's wonderful news Colleen, it is really good to hear.
I went back to my oncologist last week with all the information I'd got from the lovely ladies on his site. I had 7 detailed questions typed up and I gave him a copy and asked him to start at the top and work through them. And I will give him his due - he answered every question fully.
He did seem surprised that I was on first line treatment, I think he had forgotten, and because of this agreed to try another hormone inhibitor. I have afinitor 10mg and exemestane 25mg on a 3 month trial.
If it doesn't work the next step is Taxol and then he said he would consider xeloda. He was surprised I'd heard of it.
I was supposed to start the new drugs this week but my white blood cell count was on the low side so he wants it to come up a bit before I start. It is good to know that there are options and that they can be effective 😊 Thank you 🙂 Jx
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I'm on the Welsh English border, from your name I'm guessing you are in north Wales? How many weeks of taxol are you expecting? 
Eribulin - next chemo
What next
What’s next after Piqray?
CT Scan with New Liver spots😪, next treatment? (Ibrance & Letrozole 18 mths 1st line)
Starting Ibrance and Letrazole next week
