Peritoneal secondaries

Hi, l was diagnosed with secondary breast cancer in the peritoneal mesentaries in nov, so far I have found no one else with this, I have been on oral chemo since then, called palbociclib and faslodex injections, up to now I am responding to the treatment, as you say there does not seem to be very much information on this, but maybe now we can at least talk to each other.

love and hugs Jenny xx

Hello Jenny, nice to hear from you tho I am sorry that it is for this reason.  We seem to be about the same age, I will be 68 next month.

I wonder if you mind me asking how you became aware that you had secondaries in this area. I had gripey pain and cramps for almost a year but they thought it was IBS.  My TMs started to go up quite quickly, does your Onc use them as a monitor?

I was put on oral chemo (exemestame & everolimus) but it didn’t work so they took me off it after about 4 months, it caused dreadful mouth ulcers.

I was Dx in 2012 and remained stable for almost five years on  Letrozole.  It would be nice to ‘chat’

I live near York.

Hi, after my initial breast cancer I had radiotherapy and chemo, and was put on tamoxifen, I had lots of side effects which drove me mad. Finally my oncologist said I could have a break to see if it was the tamoxifen, after I came off it I started to get pains in my tummy on the left side, at first it was a niggle then it got really bad just like a sharp pain that would not go away. As I suffer with IBS he said it could be that.

But it did not settle so they did some bloods and a ct scan and that’s when they found it. I had raised tumour markers too. I go back every 4weeks to see my oncologist who is brilliant, and have blood tests which they always check my tumour markers. They are going down and my latest scan showed it hadn’t got any worse.

Still none the wiser as to what it actually is as no one I talk to has ever heard about it, my own gp said he hadn’t come across it either. Seems we are both a bit off a mystery. Hopefully we can help each other.

By the way I live in Coventry

Love and hugs Jenny xxx

Hi again grannylara. I also was told that I had lobular BC and mine is very high hormone receptive.  Lobular cancer doesn’t often manifest itself with a lump.  They told me after my mastectomy that I had numerous tumours - too many to count - which were spread through my breast like grains of sand.......very descriptive - and all of them less than 2mm in size.

My Onc. also told me that lobular cancer is more likely to go to the peritoneum, which he described (very graphically) as the apron of fat around our abdomen which is there to protect our abdominal organs.  

However because lobular cancer is often highly ER+ there are more treatments to try.

I am finding that I get very tired on pacitaxol, but the side effects aren’t too bad.  The hope is that the chemo will shrink the ‘thickening’and then hopefully I can go back on an hormonal treatment.

I am having my weekly bloods tomorrow and then chemo Friday.  I am hoping to find out if my TMs have gone down.  Fingers tightly crossed!!

Xx

Hi lynnq

Just a short question on the exemestane and everolimus.  Can you advise IF you were advised by your medical team that this is/was oral chemo?  I am on this at the moment and have been constantly advised that it is a targeted inhibitor of mTOR kinase.  No-one is advising to me that this is chemo.

Hello Chloecat

I was told that Everolimus is an oral chemo and that exemestane is a type of hormone inhibitor and that they are often used together.

When I signed the consent forms I do believe that everolimus was described on them as an oral chemo.  Unfortunately I threw the forms away after I was taken off of them so can’t check.

They may not be a chemo in the usual sense of the treatment, but they were certainly more tightly controlled than the other treatments.  Ie. I had to have an oncology appt to get them prescribed every four weeks and had to return any unused ones - whereas the exemestane could be picked up from the pharmacy..

Hope I haven’t confused you!

Did you sign consent forms?  How are you getting on with the EE combination?

Hi Lynnq

I had invasive  lobular bc too and lymph node involvement also high hormone receptive too, I had 4 FEC chemo, then 12 weekly pacitaxetol, and then  this time around oral chemo. I was told much the same things by my oncologist  that it was more than likely to return. They have told me when they find the palbociclib stops working they will try another chemo, and so far it seems to be working, so just taking every day as it comes. Hope all goes well with your chemo Friday.

Hi chloecat45

I agree with lynn that the everolimus is an oral chemo, most oral chemo are used in conjunction with aromatise inhibitors.

Love and hugs Jenny xxx

Hi lynnq

Just pulled out my Consent Form - says Patient agreement to investigation or treatment.

Medications listed and the reasons - control of breast cancer.

Serious or frequently occurring risks - infection, fatigue, anorexia, nausea, sore mouth, diarrhoea, diabetes, high cholesterol, lung damage, hot flushes, joint aches - everolimus leaflet lists more even more concerning side effects......

Nowhere does it mention oral chemo. 

EE combination has caused some problems in the early days in that I only ever had a box with no leaflet in for the Everolimus until Jan 2018.  In October after 2 weeks on them I was given clarithromycin for a 'tooth' problem which is contra indicated.  I suffered badly with hives which my attempts to deal with were just so wrong.  It took a visit to the ED to sort it out and stopping the drugs until I was clear.  Additionally my Ramipril (blood pressure) tablets are also contra indicated on the leaflet but not on their 'gospel' system to say so.  As, it seems, there isn't anything untoward with the Ramipril I'm taking in me I am continuing.  However having said that I am now experiencing extremely painful blisters and for the life of me I just can't think why this is happening again as Ramipril has been constant and I have not taken any antibiotics.  Do you have an insight?  Just as with you I am also having to get blood tests and consults every 4 weeks to get the next batch. 

I was at a consult today.  Listed out to them some of the niggly things happening like the blisters and they asked if I wanted to stop the treatment.  Now where did that come from?  I haven't suffered from mouth ulcers at all which I could understand them asking this question as this could affect eating and lead to ataxia.  To tell the truth I just don't get on with the oncology side of breast cancer care.  Today's meeting has been no better.

I did google 'oral chemo' drugs but everolimus was not listed on 2 sites.  I think I did pose the question to an oncologist at one meeting and they said that it was certainly not chemo.  BUT it may be as you said that they may not be a chemo and ARE more tightly controlled but I thought for the reason that they are more expensive and authorisation from 'somewhere' has to be given and are rightly controlled because of that.  One site I looked at called them antineoplastic chemotherapy!!!!  What's the difference?

So I'm not much wiser but I do thank you for getting back to me.

Love and virtual hugs

Hello

Sorry it has taken me so long to reply to this - I've been in and out of hospital and missed this thread.

I have secondaries in liver, bones and peritoneum and was doing well on capecitabine for over two years when about 2 months ago I had severe abdominal pain and symptoms of a bad tummy bug (diarrohea, sickness etc.)  On admission to hospital it was found to be a bowel obstruction, not a tummy bug, - the cancer in my peritoneum had induced thickening of the bowel wall.  I was put on nil by mouth (not even water, so I was on a drip) for several days then gradually reintroduced first liquids, then soft, low fibre foods and over the course of the next 4 weeks introduced other foods until I was eating a normal diet again. The capecitabine was stopped as it was thought to have lost its effectiveness and now I am on eribulin.

Prior to the capecitabine I was on exemestane, which had worked very well for me years ago keeping me in complete remission for nearly 10 years, but this time to be taken with everolimus.  I was told that everolimus is very expensive and each case has to be applied for separately by the professor.  There were also strict guidelines as to who was eligible to have it.  After about 2 months on this EE combination I developed pneumonitis (a known possible side effect of everolimus) which affected me so badly I was immediately taken off it and given steroids to  sort out my lungs, then put on capecitabine. 

Everolimus is obviously an anti-cancer medication and I don't really understand why it is important to know if it is 'chemotherapy'?  Does it affect benefits or anything else if it is deemed to be chemotherapy?

Hope everyone is OK.

Hello Susan and thanks for sharing.  Sorry to hear that you have been having  a difficult time with your stays in hospital.  How are you now? 

I have just finished 12 weekly pacitaxetol and I am seeing the Oncologist on Thursday to see what happens next.  Don’t know if the chemo has changed things - for the first couple of weeks my TMs continued to rise (probably until the chemo kicked in) and after that it then remained stable but has not come down.  That was about four weeks ago so waiting to see if it had any effect for the last few treatments.  The chemo wasn’t too bad but I am hoping not to repeat it any time soon.  I am so tired and lacking in energy and hoping to get back to some normality.  

I am on a low residue diet and I find it very difficult to have a good diet because I also have a dairy intolerance and a couple of other allergies.

Glad that you are on a normal diet again, have they advised any restrictions on what you eat.

My ‘blockage’ is still causing me problems, worse some days than others.  The hope was that the chemo would reduce or even clear the thickening in the peritoneal wall which is impinging on my bowel and then Onc mentioned putting me on tamoxifen to keep it stable.  After dx and bilateral mastectomy I was stable on Letrozole for almost five years.

Your post has proved encouraging for me.  It seems that there are still treatments available which I haven’t tried yet.