Has anyone else had this?

I've read all your posts for going on two years now. Some of them are truly inspiring. I've never contributed until now. My wife Ingrid was diagnosed with grade IIIc 3 1/2 years ago. At that time they gave her "months". Her cancer is low grade, but her tumours are calcifying i.e. turning to bone. They are inoperable. One has strangled her bowel, and she has been fed TPN through a Hickman line for over two years now, and she has a gastrostomy tube from her stomach which empties into a bag strapped to her leg. She cannot eat anything. Chemo wise, she has had Carboplatin + Taxol (she's allergic to Taxol so only had two minutes!), ECX, Trabectedin, Caelyx, Abraxane and now just Carboplatin. She cannot take any oral medication so everything has to be IV. Her Consultant has advised against Avastin due to possible bowel perforations which could be fatal. Nothing really seems to be helping. Does anyone have a similiar experience?

43 Replies

  • I have not had an experience like your wife's but I was also diagnosed with low grade ovarian cancer three years ago. I had 5 cycles of Carboplatin and there was NED for two years but it started growing again in October so I tried Carboplatin Gemcitibine and Avastin. I stopped chemotherapy after 4 cycles and carried on with the Avastin but stopped that recently as their are signs of early growth on the bowel.

    It sounds like you have tried a lot of chemotherapy options there are other medications but sadly these are oral. Are there any surgical options?

  • Hi, thanks for the quick reply! I will challenge our Oncologist with the Carboplatin Gemcitabine option. We tried surgery 2 1/2 years ago at the Marsden but the disease was too extensive.

  • To be fair I only tried this regime to access the Avastin. I am sure your oncologist has your wife's interests at heart low grade ovarian cancer is very frustrating to treat it doesn't always respond well to traditional treatments.

  • Thanks. One question - what is NED?

  • It's No Evidence of Disease. Xx

  • Of all the IV treatments available, the one which seems to get least used is the Rotterdam. This regimen is widely used at the Christie and consists of 13hr IV overnight of Cisplatin plus etoposide oral tablet which would be excluded in your case. Cisplatin is 4x stronger than carboplatin, it is a gruelling regimen because the 6 cycles are weekly. Many treatment centres opt not to use it as they balance quality of life over less toxic treatments. My late Sandra had this regimen as her 2nd line treatment and it gave her the longest period of remission of 12mths even though she only managed 5 cycles and she did not continue with the etoposide. Of all the regimens she endured this was the one that extended her life to such an extent she became well enough to get married before a recurrence forced her onto other regimens that were in my opinion ineffective. Rgds Paul

  • Hi .. i have calcified growths across the abdomen and in the small bowel mesentery. I don't really know what that means but as you say, they're hard. My disease is inoperable though I had some ops before I got this so in some ways, they helped. I'm sorry to hear about your wife's situation. My oncologist says low grade cells behave differently to high and not only grow slower (though i do have some low grade actng like high) but build on each other. There is a MEK trial but I'm not sure if there is an intravenous option for this drug. I really hope whatever your wife has, will be of help. Love to you both T xx

  • I also have some calcification in some of my nodules. I read somewhere that it can be more common in low grade disease. Calcium is often produced by the body as part of the inflammatory response

  • I read the opposite about calcification which confused me. (I'll search the link to see if I can find it) The writer, who was comparing low and high grade, said calcification wasn't a feature of low. However, I can see from this thread that it is for three of us at least. What does calcification mean in terms of disease progression and prognosis? Do they go away with treatment? Do they continue to grow? Do they show how other nodules are likely to behave? If so, shouldn't I be on treatment for this reason alone? I mean, wouldn't it be better to get rid of them before they calcify? I don't know any more but even with years on here, I don't seem to get answers to these questions.

  • I don't think the calcification process is fully understood and the paper I read didn't think it could be used as a reliable marker. Chemotherapy is also thought to cause calcification through cell death and necrosis. Sadly there are limits to our knowledge. I think you need to tell your consultant how you feel about watch and wait as it seems to be reall bothering you.

  • I've agreed to it though it hadn't been easy at all. I don't think going back on treatment is an option either that I'm willing to push forward on my own. I have an input so she will refer me to The Christie. I see her in about six weeks. I don't think there have been many cases of a low grade with as good a response as I had so I haven't bern able to compare with anyone yet. At the last session, she said there was a reduction in inflammation in my abdomen. When I asked her why that was, she said she could only comment on what she saw, when I asked her if this meant the disease had reduced, I didn't get a clear answer. I'm not sure what it meant when my local hospital said I had advanced disease which had progressed. incidentally, the heart specialist at the same hospital declined to do heart tests even though there was an abnormal ECG. My GP has re-referred me and said I was entitled to investigations the same as anyone else. This response was unprompted by me so I'm thankful to her. I don't want to have the Watch and Wait cessation conversation until I know the status of my heart since even not knowing may limit my options. Plus, Hubbie has planned some treats for me. I will talk to my oncologist soon so, hopefully, I'll have the results by then. Thinking about it, I'll have to re-juggle these dates.

  • Do you mean stabilisation? I think a few of us had stabilisation after first line? I was NED for two years

  • I had more than a 50% response on first line.

  • That is a good response. At the time all I remember hearing was the oncologist telling my parents and I that I was not in remission but I wasn't going to have any more treatment.

  • Which is a little premature if I may say so and ill informed of him in hindsight.

  • I don't think he meant ever just at that time. He was trying to be really encouraging but my mum wanted to know if I was in remission or not. I think that threw him a bit

  • Ok. Understood. This must be very hard on your parents.

  • We don't really talk about it. I mean I tell them what is happening etc. Mum and I are going to Prague in October for a short break. She didn't want to go at first because she hasn't been abroad much and gets very nervous. I just want some happy memories we can both look back on

  • I do think that's an important thing for me too,

  • A reliable marker for prognosis?

  • No

  • This is the best link I've ever found. Here it is ..


    I'd remembered it incorrectly. Psammoma bodies which I presume are calcified bits are a feature whereas at the top of p13, it says necrosis isn't a feature. I did have a necrotic growth removed last year and my oncologist says nests are formed (which is confirmed at the bottom of p12) and the middle can die off. The structure can then implode (or the other way round?). The writer says that in a small proportion of low grade cases, the low grade cells behave like high grade but I don't think this means they

    have the high grade p53 mutation. My oncologist says the disease at the front is high grade but I don't think she's saying it's high grade disease. I think she's saying it looks like and is acting like high grade. In a letter to the Hospice, she wrote that I have a mix of both high and low. However, I'm hoping the MEK works for both since (in my head) they both are low grade in their origins. These are the fanciful thoughts of a patient who is making up her own theories (based on evidence) in order to make sense of her condition. In other words, I think this is what a happening in my own body but not necessarily in anyone else's.

  • I was reading about those as well my understanding that they were something to do with the papillary nature of the cells.

    I wish they would define better outcome as far as I am aware it's still not curable, it still kills you just live longer with fewer treatment options

  • This is the link which supports IMOH (In My Own Head) theory that the calcification is sometimes a good sign in that the process halts the proliferation of cells from that particular area.


    Whether it's the bodies own protectional response or just an incidental effect .. I'm not sure anything has been proven either or in any way yet. I like to think calcification is the end result of the body's fight the disease.

  • It can be part of the body's defence mechanisms. The cells will use calcium deposits to wall off an infection

  • That's good, isn't it? Do you have a link so I can read more?

  • No that is good not sure it always applies to cancer though. This is the paper I was reading this morning birpublications.org/doi/pdf...

  • Thank you for this link. The comparisons weren't equal as both groups had differently staged disease with the calcified patients being Stages III and IV mainly but it's very interesting reading.

  • I think that must be a major frustration in those types of analyses because you are examine retrospective data so have to take what you can get

  • Hi Tina. Thanks for this. Would you know what the trial is called and where it is being conducted?

  • The MEK trial is at 3 centres in England. Nottingham University Hospitals, The Christie, and The Royal Marsden. It's an international trial through Array Biopharma with about 15 months to run in the UK. I have the email of the representative for Array B. who has always replied promptly to me. If you'd like that, I'll pm it to you. The MEKs are the first targeted drug specifically to inhibit the pathway of my type of disease and the results are encouraging. There is also an academic (rather than a commercial) trial though I'm not sure I can publically divulge that as it's not set up yet. I will pm it if you'd like information though.

  • Yes please!

  • I am experiencing something similar at the moment. Diagnosed in Dec 2010. Usual first line tx followed by a relapse within 3 months. Second line Rottetdam Regieme again relapse, third line Taxol which worked for 5 doses then Ca 125 started rising in conjunction with sub acute bowel obstructions - managed conservatively. Next Cisplatin again with Gemcitabine, in trouble very quickly at the end of 6 cycles. Christmas off and feeling reasonable with careful eating but in trouble again early Jan with bowel symptoms and fast rising Ca 125. Calyx commenced along with total bowel obstruction. Now on intravenous nutrition at night and unable to eat or drink for the past 3/4 months. Now on low dose Cisplatin again ( 3 on / 2off))

    So difficult but I am plodding on trying to stay out of hospital and keep some normality at home for exams etc.

    Not sure any of this will help anyone else but it is the first time I have had energy to type all of the above. Need a story or two about bowel recovery as surgery or an option. My Naturapath Is my others source of help and support. Dear Paul I have read all your words of wisdom over a considerable length of time and have wanted to pass on my sadness on hearing of Sandra's death.

    Really sorry for the ramble.

    Best wishes to all,


  • These posts are almost the first time I have heard about the experiences of others with low grade. I had a partial response. I was diagnosed in March 2011 and when I was first told my response was partial, I didn't know at the time how lucky I was. I had a necrotic piece removed last September when I was taken into hospital with abdominal pain and a temperature. I had confirmed progression last September but it's June almost now and I've still had no treatment. I have increasing pain medication. I was wondering how pain is managed with patients having TPN since I have patches which are topped up with oral medications. I get the feeling that calcified growths aren't going to respond to treatment but then there's no reason to suppose they'll grow either since they're not alive? I had in my mind that the calcification took place during treatment? Am I wrong? It's difficult to get anyone to say. I can now see that a person can live a long time on TPN which I didn't know before. Thank you for saying that and yes, these stories have helped me very much. i asked my oncologist about bowel blockages since it's what worries me a lot and I've had so many now and she says it depends where the blockage is. I've been told I have a drainpipe bowel which basically means it has no function of its own and serves as a conduit basically. I find this aspect hard to deal with and I suppose PNT might be the next step. I've agreed to Watch and Wait with progressive disease and increasing symptoms but the ceasing of eating and drinking hadn't been explained to me. Both Ingrid and Brid are coping with TPN which I find gives me hope. It must be hard (apart from the technical aspects) though because eating and drinking are such social activities. Is it usual to get support in dealing with this? Thank you all. T xx

  • Tina, it's not easy coping with TPN, but it can be done. Ingrid does all her own hooking up and unhooking just for the freedom, as the TPN nurses were suggesting ridiculous times for visiting. Sterility is the key, as you CANNOT have your line (either Picc, Hickman or Port) infected. We have a separate bedroom equipped with all the stuff, and the door is shut when the unhooking is done - out of sight and out of mind. If you do have TPN, you should get a special rucksack to carry it around along with a rechargeable pump. Saves dragging a "Robbie Robot" around with you. Ingrid drinks a bit, but doesn't eat, as it makes her venting peg block. The social aspect is difficult, but she finds that she enjoys cooking more now, and when she cooks for the family she sits at the table as well, and enjoys our enjoyment (if you know what I mean). She occasionally craves food, but has gotten used to being without it. She never feels hungry.

  • This has reassured me enormously. Thank you so much. X

  • Brid, thanks for sharing. I'm surprised that you cannot drink. Do you have a venting peg? We queried bowel surgery. We got a NO, as Ingrid had radical radiotherapy 23 years ago and deep fried her abdomen. They said it would be like operating on granite.

  • You could try 'Ancient Minerals Magnesium oil spray', she wouldn't have to take this orally as it is simply sprayed on the skin. Magnesium is vital for calcium to remain in solution in the body, it is also a natural relaxant and assists the body's detoxification mechanisms.

    Intravenous vitamin C is also remarkable but not available through the NHS. You would need to go privately to somewhere such as Breakspear Hospital in Hemel Hempstead.

    Best wishes, Emma

  • Thanks Em. The magnesium sounds interesting.

  • Wouldn't magnesium and vitamin C be constituents of the TPN? X

  • They are, but quantities may be an issue.

  • Ok .. I understand now. X

  • Many thanks for all your comments and words of encouragement. Ingrid's pain is managed using diamorphone which she injects herself. I wish you all the best. God bless.

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