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Mum with Stage 3C Primary Peritoneal Cancer and a partial obstruction, currently in a hospice. Can anyone help?

Wispywillow's picture
Wispywillow
Posts: 1
Joined: Feb 2013

Hi guys, My mum is 69 and lives in the UK. She was diagnosed just over 2 years ago with PPC (Low grade serous papillary adenocarcinoma) . She had gotten sister mary joseph nodules in her navel which is why she was tested. Her CA125 was approx 120 She had a biopsey taken and an exploratory surgery. They decided that she had too big of a scattering of microscopic tumors so said surgery wasnt an option. 

She then went to a hospital near by with an oncology unit and was given a course of carboplatin. This helped lower her CA125 levels a little but not much. Scans showed the tumors were still there. Dr's kept saying it was difficult to tell between the tumors and calcification. 

She was then put on letrozol. This helped control the cancer and slow it down a little for about 8 months. After this the cancer started growing quicker again and her CA125 started rising again. 

It was at this point that we got her referred to the Royal Marsden. They told us it was a shame the other hospital hadnt combined carboplatin and taxol as together the chances of success are much higher. They also told us that because she had prev had carboplatin she couldnt have it again. They told us about a MK inhibitors drug trial that might be suitable but wasnt ready yet.

They decided to give her Taxol chemo. They said she could have each course once a week for 6 weeks and have a maximum of 6 courses with a 2 week break between courses and a scan to check on progress etc. She started the first course. got 3 weeks in and her platelets or something similar had dropped so low they had to give her a weeks break and 2 injections to boost her just to get her through the next 3 weeks of that course. She managed ok but side effects of that chemo compared to carboplatin were pretty horrible. 

After 1st course we went back for her scan and discovered that during that time she had grown 2 new 3cm tumors in her right illiac fosser and the chemo wasnt working. My mum was obviously very upset and distressed. They then told us she wasnt suitable for the mk inhibitors drug trial due to a lack of mutation in her cancer. The Royal Marsden then decided they would try to control the cancer and hope that they could maybe make the speed in which it is growing lessened by putting mum on tamoxifen. They told her she could never be cancer free or even get cancer in reission but hoped they could prolong her life.

That was last Oct perhaps. Now we are in Feb. Since xmas (well on and off b4 a lot but all time now) mum has barely eaten anything she had very bad diarrohea most of Jan and part of Dec. By late Jan it started turning to sickness and GP got mum in local hospital. They let her stay 2 nights and gave her IV fluids. Managed to get sickness under control but sent her home still with diarrohea. 2 or 3 days later she got really bad and got sickness again followed by trying to sit on loo to go to the loo and having total blackness go in front of her eyes. We got GP out again. He didnt want to get her in hospital so instead spoke to our local hospice to see if she could do 2 week respite. we had to wait a couple of days for a bed but in the interim the hospice at home people came and put mum on syringe drives with anti sickness drugs in. 

Once she got into the hospice they discovered she has a partial blockage. They have tried several anti sickness meds and another med which si meant to help dry up gastric juice but as yet none are stopping her sickness. They have no plans at mo to do anything else to help her blockage. They havent even changed her diet and are still offering her such things as roast pork sandwiches on the menu. 

Im struggling to find things to help her. I have looked at sites who recommend more liquid based low fibre diets for blockages. Does anyone have any dietary advice at all? She is getting heavy gastric juice build up causing stomach distension and pain. I can PM anyone more details. 

Also i have recently found a place in North Hampshire and Basingstoke hospital, they do a 'contraversial procedure' for patients with things like cancer of the appendix which often spreads to the adominal cavity including the peritoneal wall. They undertake a massive surgery which is known as the mother of all surgerys (MOAS) followed by a chemo bath (chemo heated and placed directly inside the abdominal cavity and left for a set time, then drained). I wodnered if anyone had any opinions on this? as we are currently trying to get a second opinion from them. 

Many Thanks in Advance

N

Barlo
Posts: 1
Joined: Feb 2013

I'm so sorry to hear of everything your Mum has been through.  My mum was also diagnosed with PPC a year ago, and it's been a very difficult time.  This is actually my first post to the forum.  I will write more of our experience later, but wanted to respond to your  post first

If your Mum is still suffering from diarrhea, make sure the doctor(s) look into the possibility of infection.  My mum had an undiagnosed case of C.diff. for some time which led to a delay in her chemo treatment.  Once she was placed on Vancomycin, she was able to continue treatment.  

 

I've read that the chemo bath is a very toxic treatment, but I think it's worth asking about.  Maybe have a second opinion re: the debulking surgery....many women have the "scattering" you mentioned.  

 

We are planning to have assay testing for my Mum to figure out what chemo drugs will work best for her, since the first line failed to give her much of a remission (2 months).  It seems like this might be appropriate in your Mum's case, too.

 And for blockages, the best for my Mum has been Miralax and prune juice.

Best wishes!

 

Nflinchum
Posts: 71
Joined: Jun 2012

Take her to MD Anderson Cancer Center in Houston, TX in the United States. Awecome and best cancer hospital in the United States. i have PPC and went there for a second opinion. Hope things get better for you and your mom.

PatsieD
Posts: 100
Joined: Jun 2012

I'm really sorry to hear about your Mum. I've had four previous bowel blockages myself and have low grade microscopic throughout the abdomen too. When I was taken in for the fifth time, I was told my diagnosis. I've asked my own oncologist whether they will operate if I get another blockage but she was pretty evasive. I think this was because it depends on where the blockage is. Do you think this is the case or do you think, given your own Mum's experiences, they don't operate at all. I'd really know the answer to this question. As regards the major surgery or 'debulking' as it's called followed by heated chemo in the abdomen, I wasn't offered this and was just given IV carboplatin without Taxol. I was told that Taxol could be kept in reserve. My tumours are growing but at a slow rate at the moment and I was told that if I have an aggressive relapse, I would be able to have it if there was a gap of 12 months between treatments as some forms are platinum resistant, which my own is. I wonder if I would have been better having the combined therapy in the first place now knowing what your Mum was told. I was diagnosed around the same time as your Mum and on my last appointment, I had the news that there are new drugs for low grade which I assumed were MK inhibitors. My doctor didn't mention that I wouldn't be a suitable candidate even though my cancer is slow growing too. It's all strange and I would really like to know if I could insist on the removal of a blockage in the likely event of having one and why I was told that MK may be suitable for me when it wasn't for your Mum. You can message me if you like. Meanwhile, my heartfelt good wishes go out to you, your Mum and your family. x

Millie2011
Posts: 28
Joined: May 2011

Hi, first of all I am sorry that your mum is having trouble with blockages as I know how hard it could be and to be standing aside your mum trying to help.

This I have been through a lot and I have a few suggestions. The first is to get up on feet. Lying in bed as my mum did a lot due to pain etc made the problem a lot worse. When she had blockages, which happened regulary throughout a number of years, they performed surgery and changed her diet into more fluid. This you can ask your dietists or search on the net. For mum, the best things were soups with not so much "clog" in it as cream, nutrition drinks for elderly which you can by at a pharmacy and to dring a lot, not only water, but milk and juice as well. The mix is doing good.

Eventually when the problems got worse, they put in a "bag on ther stomach" and then she didn´t have to worry about that part anymore and could eat whatever she wanted and found new strenght to fight the desease. She had a number of great months in the end. Best of luck and all my wishes that things will turn out good for you and your mum.

/Sophie, Sweden

Lin from OH
Posts: 4
Joined: Apr 2013

I'm also sorry about your mum. Continue to be her advocate.

 

I had blockage problems, too.  Eventually, I had a colostomy (not the most pleasant thing, but it beats what I was going through before).  Prior to the colostomy, my diet was severely restricted!  For about a month, I was on liquid only (YUK!  But, I learned lots of food could be liquified in a blender).  This helped with better absortion, less bowel movement,etc.

I can't imagine any medicatl facility not modifying her diet.  Perhaps you should insist on that.

I also did the dietary liquid supplement drinks.  My daughter made them actually very appetizing when she turned them into iced coffee!  She would make expresso, freeze it in ice cube trays, then mix the protein mixture w/ 3 ice cubes - really not bad if one likes coffee.

 

Good luck; hope things improve for your mum.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi:  I have gallbladder cancer which spread to the liver and the peritoneum.  I am not eligible for the peritoneal stripping surgery following by HIPEC (the heated chemicals injected into the abdomen), and I can't have more chemo because that is what contributed to the perforated bowel I had last summer which almost killed me.  I was recently diagnosed with a partial blockage in the colon.  While preparing for a colonoscopy, nothing happened, i.e. nothing came out.  The doctor doing the colonoscopy couldn't get through the colon so another confirmation of a blockage.  I ended up in hospital and the CT scans showed a tumour growing around the bowel that is causing a narrowing of the colon.  They want to avoid more surgery (I've had 4 abdominal surgeries in 2 years), and are thinking of alternative ways to keep the bowel open like a stent.  I already have a colostomy. 

I have been on a liquid diet for some time, first a clear fluids only diet (ugh!), and then a fluids only (ENSURE  - which is one of the liquid food supplements mentioned in several posts - yogurt, smoothies with added protein powders, jello, etc.).  Now my dietician has said I can try some soft foods.  Which I did.  But that just contributes to constipation in me so not a good choice.

You want to avoid these blockages as they can cause a perforated bowel, especially if you have diverticuliitis.  A perforated bowel is definitely life threatening.  I was on life support for 3 weeks after mine.

Keep us posted.

Cheryl

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