Hello again everyone. Well I had my extre four pacitaxitel infusions and Onc put me on Tamixifon but it gave me dreadful UTIs and I had to stop before the first month. The pacitaxitel kept me stable for the 16 weeks but there was no improvement and my TMs have risen dramatically over the last four weeks so I am to go on capecitibane. Also a scan to see if there has been spread, TMs have risen so much that I am expecting that
Kathy. My symptoms are similar to yours. I have buscopan to help with the cramping and was also advised to try to follow a low residue diet, which did help....but very boring. I think that I am quite lucky because I find that paracetamol is an effective painkiller for me. My bladder Is sore. Have you had results yet to see if further spread.
janie, i have spread to soft tissue in neck. is yours classed as soft tissue. i can't find any information on mine either and it's so lonely, so i sympathise with you
Hi ladies, not been on here for a while.
lynne q - what a pain having more chemo added on at the end. That must have been such a drag. But if it’s because it was working that has to be a good thing. Hope it’s going ok and the end is in sight.
kathy, I’m interested to hear about your cramping pain. I get a similar pain across my tummy just above my navel, usually about an hour after eating. I thought it might be related to food intolerances as I have them too, and it’s not every day. They don’t last long so I don’t take any pain relief, so I’m sorry, i can’t help you with that.
thanks for your posts, it’s goid to feel connected to others with these mets.
Can you tell me a bit more about the bloating? My waistbands are definitely much tighter at the moment generally, although I haven’t put on any weight or stopped exercising. Also I get sudden bloating where I have to go and change into something looser, at certain times. Again this could be my food intolerances, although I try to be good!! Does bloating associated with mets happen this quickly or would it happen over a few days? Any specifics would help, thanks
good luck everyone
Hello everyone. I too have lobular mets to the ovaries and peritoneum. Diagnosed stage 4 in 2016. First primary way back in 1998. Was stable for 2 years on Palbociclib and fluvestrant but scans showed more thickening to ovaries. Trying Letrazole for the last 2 months but CA. 125 up to 44 from 29 so no looking hopeful for this A1. Also awaiting results from hysteroscopy to see if mets have invaded uterus too.
Ive had an easy run on symptoms so far but am now having many, gynaecological, bladder issues as well as pain and cramping especially after eating and on car journeys. At worst they can last a few days but are difficult to relieve with pain meds. Bowels still working though thankfully and only very little ascities showing on scans.
It does seem that we get very varied symptoms with these mets and they are no so easy to deal with.
What pain meds have others found effective?
Best wishes to all
Hello again everyone. Hope that you are all as well as you can be.
I had my last chemo on Friday and am hoping for some kind of normal to return now. I have been really tired but didn’t suffer much nausea so that was a blessing. I have a very poor diet at the moment - to help my bowel symptoms I have a low residue diet, but I also have some dairy intolerance and a couple of other allergies, so I expect that contributes to the tiredness.
Seeing the Onc on Thursday to find out what happens next. My TMs stopped going up after the first couple of weeks and then remained stable but have not gone down so not sure what will happen next. The hope was to reduce the thickening in my peritoneal and then keep it stable with another hormone therapy.
I have found more info regarding mets in the peritoneum on the Macmillan web site, and it seems that bowel problems occur often with these.
Hugs to everyone.
Hi Lyndyloo. I do agree with you about lobular cancer. Mine was detected by a routine mammogram and I had no symptoms, lumps, thickening etc. They showed me the scan and it was a tiny line of about 5 pin pricks which showed. When they did the mastectomy they found it in other areas of the same breast as well.
I was having a breast reduction on the other breast and they found numerous tiny tumours in there as well which hadn’t shown up on the MRI.
My TMs seem to be a good indicator so the Onc prefers to monitor them with occasional scans when symptoms change.
he also told me that lobular cancer is only 10% of cases and is usually thickening or denting instead of lumps.
Hello Windflower, thank you for responding, it does help to know that someone has had a similar problem which has been treated. Are you on any treatment now?
When they tried to do the colonoscopy they couldn’t go up more than 10cms. It surprises me that that was the case but that I can still ‘go’ although it is in small amounts maybe half a dozen times during the day. They have also recommended a low residue diet which helps somewhat with the cramping and pain.
They say that the thickening in my peritoneal is impinging on my bowel, but that the fluid in the peritoneal reduces and increases during everyday life which causes the thickening to be pushed back and forth. They are hoping that the chemo will reduce or even resolve it and then I can then go back onto a hormone treatment again, they mentioned tamoxifen.
They also have mentioned your scenario to me but have said that would be an emergency. Also they say that these days there has been some success with fitting a stent into the bowel.
when I was first Dx the mentioned the ‘shadows’ in my peritoneal area after my first couple of scans but after about a year they reported then as ‘no longer visible’. I asked if that meant it was gone and they said that they could not say that, but it meant that they had responded well to treatment. My bone mets have been stable the whole five years since Dx.
I hope that your scan goes well, my Onc is also reluctant to order scans.
It has been a help just writing all this down, especially to someone who has an idea what I am talking about!!!
I have posted on this thread in the past but I don't know if I can help you really. My secondary breast cancer came to light 20 years after my primary, with no trouble in between. It came to light because breast cancer in my peritoneum blocked my bowel and I couldn't keep anything down and was very poorly. I had to have an ileostomy which I still have. I was surprised that you have a blockage but can still "go". My last scan last May didn't mention anything in my peritoneum, but I can't believe there isn't any as nothing was removed. I had FEC chemotherapy so perhaps that got rid of it. My next scan is in May - I had to press for it as they didn't seem to want to do one unless I had symptoms. I will ask when they get the results, about the peritoneum. I also have multiple bone mets which have been "stable" for at least 2 years. I don't suppose this is really of any help to you, but just to let you know that you aren't the only one who's had this type of met.
best wishes, Windflower
Hello again. I thought that I would bump this thread again to see if we have any more who can give insight into peritoneal area.
After almost 5 years being stable on Letrozole I began to experience some bowel problems I was told last Sept that I had thickening around bowel area. Onc changed treatment to everolimus/exemestane which I had for three months or so but TMs continued to rise.
I had a colonoscopy appt but they were unable to do it because I had a blockage which they couldn’t get past.
CT scan ordered showing more thickening - they don’t think that it is bowel cancer but thickening of the peritoneal which is squashing my bowel and causing the blockage, so progression of secondary BC.
So now I am on weekly pacitaxetol, I have had 4 treatments of 12. My TMs continued to rise after first two, but have fallen a little after the third one, so fingers crossed that it is working.
Any experience of this - as has been said before- would be welcome, there seems to be so few of us.
I don’t seem to get much bloating just difficulty moving my bowel, no constipation or diarrhoea just getting it passed the blockage.....sorry - TMI
My hair is beginning to fall out and I get very tired, but bone mets remain stable so not all bad news.
Hope that anyone reading this is as well as they can be..
No my mets are in my bones lymth nodes Have had sbc for four years. Waiting to see if I can go on a trial x
i just popped in cos I'm having a bit of a down day. Just fed up with the ongoing chemo (Kadcyla) and the way my energy levels seem to be diminishing over time.
in response to some of the questions, the treatment for peritoneal mets seems to be systemic treatments such as chemo or hormonals, i.e. Treatments that move through the bloodstream to your whole body, and are targeted according to the type of BC cells you have (ER or HER positive/negative etc.) Apparently the cells are always trying to mutate to get past whatever treatments we are on, so that's how they can change from ER positive to negative etc. The only more localised treatment I've read about it called HIPEC and is a combination of surgery to remove all visible tumour with 'washing' the abdominal cavity with heated chemo for an hour or so before stitching you up again. It has seen some positive results but is mainly used in cases of colorectal cancer so far. It sounds pretty major but the chemo is limited to the abdominal cavity, so they can use a stronger dose. The heat makes it more effective.
Anyway, not much more to say, except I hope you're all doing ok on your treatments and keeping the 'uggers at bay,
My Sister had breast cancer 9 years ago and last year found it had returned on the peritoneum. Letrozole has stopped working and has had chemo but suffering with fluid and has now had permanent drain fitted. Her cancer has changed as well to becoming driven not only from oestrogen. Not sure on next step forward as not a lot of information on cancer of the peritoneum. Hope everything goes well for tomorrow. Will be thinking of you.
Sorry about slow reply - I couldnt find the thread again ! My primary was in 2010 and showed spread to peritoneum after 5 years of tamoxifen. It was hormone positive but not now (not sure how that happens - need to ask ) I was on Paclitaxel for 8 months and now on Eribulin since June 2016. few side effects but feet are still tingly from paclitaxel. Hair, eyebrows and eyelashes are thin but hanging in there! I dont wear a wig just keep it really short. I was always fit and try hard to keep it up and eat well - no sugar, mediterranean diet. Its definately working but fluid may be building up again slowly - its hard to tell and I mostly notice when I have a big meal or swim but scan will show fluid at least. My onc doesnt bother with TMs but Im not sure if the scan shows much either. Getting results at Beason , Glasgow on Tuesday so keeping fingers crossed .
Hoping I can find this again. It helps to read what others are going through and know you arent alone.
I was diagnosed with Mets to bone in spine in 2 spots and in colon in January 2017, I am on letrozole an demos injection on e a month. I am also havingCT scan every 4 months. As you say no info out there. My primary was in 2009 and was lobular.
My sister has secondary breast cancer in the peritoneum. Nine years ago had lobular breast cancer and has been on tamoxifen since first diagnosed at 47. now wants to do chemo as tumour marker gone up. Has already has chemo 6 months ago. Is there anything that has helped you can suggest for my sister.
Hi all three of you!
I also have secondary breast cancer in my peritoneum (omentum). It was discovered 22 months ago, 20 years !!! after having ductile carcinoma in situ, and no further problems. Unfortunaely it had trapped my bowel and I had to have an ileostomy. I don't know if there is anyone else out there that has had to have this. Later it was discovered that I have multiple bony metastases, which must have been there for some time. They don't cause me any pain. I had FEC (I think that is what it is called) chemotherapy and now take Anastrozole and have four-weekly denosumab injections. Up to now the cancer has been described as "non progressive" but I've just had another scan, so hope it's still the same. Aparently secondary breast cancer in this area isn't common although it can occur with ovarian cancer or bowel cancer. I think the secondary cancer was in strands and not a single mass, so perhaps that is what it is like in the omentum.
Best wishes to you all.
Hi Lynn & Janie,
live had peritoneal mets for just over a year. I was quite bloated and had a bit of discomfort around my navel area and they picked it up on a routine CT scan. The peritoneum is called the 'apron of fat' covering your internal organs (delightful!) which is a bit like two layers of cling film that lets your organs move freely about as you digest food etc. I think the tumours are less neat and confined, and more like areas of thickening through the fat, so it's harder for them to be measured.
mine shrank after the first 3 months of Kadcyla but have stayed the same since. I had a couple of biopsies before starting treatment. The first one was pretty painful but the second one (done by someone more experienced) was much better. The first one didn't capture any of the cells either!
there don't seem to be that many of us so we are an exclusive little club!
all the best with your treatments xx
That's great your last scan showed no longer visible ! I wish that would happen to me . It has always been 'stable' after each scan which is good even though the bloating returned and I had to change chemo. What is TM ? I did have 3 monthly scans but they are getting less frequent - I'm not sure how much they can see with lobular cancer. When I was first diagnosed with secondaries I was put forward for a trial but turned down as the cancer was not measurable .
Hi Janie. Can't really help much but thought I would mention my experience.
I was dx in 2012 and had a scan which showed bone mets and also -'shadows in the peritoneal area'- the report said that they were probably cancer.
when I saw the ONC I asked how probable it was, his reply was -'it will be cancer'-
I was put on LETROZOLE and have been on it ever since.
At my next scan they reported that the shadows in the peritoneal were -'hardly visible'-
The last scan I had said that they were -'no longer visible'-
Onc always asks if I have bloating around my abdomen and when I had a change in bowel habit a few months ago he talked of doing a scan of the peritoneal after the colonoscopy which I had - but didn't since it seems I have developed some food intolerances which caused the diarrhoea.
He doesn't order scans very often, he seems to prefer TMs - which I sometimes find a little disconcerting since most people on here seem to say that their ONCS always say that they DON'T rely on them. My last scan was over a year ago.
I do get bloating around my abdomen but then they say that LETROZOLE can cause that.
I looked, as you have - for more info on first diagnosis but like you found there is not a lot out there. My cancer is also lobular.
sorry I couldn't be more helpful
I have Secondary lobular bc in the peritoneum. Am on Eribulin after 8 months on Paclitaxel. I can find so little information about my type of cancer is there anyone out there with the same as me?