KNOWLEDGE NEEDED

Hi there - We are in Northampton in England. My dear wife Christine is 58 and has Peritoneal stage 4 - diagnosed in October 08. Had good initial chemo response from carbo/taxol & ca down to 20 from 284. However now is back to 173 - she has had two ascites and the hospital are looking to start 2nd round of chemo very soon. This will be carbo/Caelyx & she has also been asked to take part in a trial which includes CADRANIB as well.

Question one - has anyone on here ever had this drug ?

Question Two - There is a hospital in Salem - Wake Forest - offering an operation called I.P.H.C. They have apparently performed over seven thousand of these and their website claims they can "add years of good quality life to patients for whom there was previously no hope" - end of quote.

Has anyone heard of this hospital, had this operation or been treated by them at all ?

Any information would be VERY helpful as we need to make adecision on treatment early next week. If these people are good we are quite prepared to travel over to Salem to see them.

Thanks eveyone, Roger

By sbender3
Posted November 7, 2009 at 12:20 pm
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also, i forgot, if you do not get a remission from carbo and taxol, that lasts at least a year, they consider you to be platin resistant, and going back to that drug, in such a short time, usually is not the first choice. carbo did not work for me, or taxol either, i got 6 months remission from carbo and taxol iv and ip, then they did carbo/gemzar, no response/topetekan/made me stable for 2 months, tamofin, no help, ascites started, navelbene a year, good results until jan of this year, taxol weekly, lost hair again, for nothing, carboplatin from may to july, worked by doc wanted me on avasatin to get rid of the ascites.

By Executive
Posted November 7, 2009 at 7:24 pm
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Thanks for that Sherry - I have also replied to you in the Clinical trials forum. I think that I need to be forceful with the hospital because of the route they are proposing regarding taxol & Caelyx - Christines remission was, at most about four months (we dont know exactly when the CA125 started to rise again because it was only at the review that they took a blood test) so the platinum resistant comment makes sense. They have also mentioned topotecan - however you can see now why England has one of the worst survival rate for Ovarian cancer in the developed world - Everything is SO controlled - all goes through a comittee clled N.I.C.E., (The National Institute for Clinical Excellance) - Their decisions are terribly slow - its in the newspapers all the time - and in the meantime of course, people die. There ARE ways of pushing though and I will be doing all I can for my darling Christine. Thank you so much again Sherry for taking the trouble to reply on this - its really helpful. With all regards, Roger.

By gpawelski
Posted November 8, 2009 at 11:38 am
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Primary peritoneal cancer is one of a number of cancers (like endometrial and epithelial cancer) that behaves like and is treated like ovarian cancer. Both arise from the same type of tissue, microscopic appearance, symptoms, pattern of spread and prognosis. This type of cancer can be tested by a functional tumor cell profiling assay, providing there is copious amount of cancer cells in a specimen submitted for analysis.

Chemotherapy "resistance" may be the most important factor in this disease. The worst toxicity of chemotherapy is failure of the chemotherapy to stop the growth of the cancer. Which is not to say that it's okay to keep giving it when it isn't working, or to give it in the first place if you have some advance reason to know that it's unlikely to work, such as some sort of assay laboratory test.

Two assay labs in the United States with the most experience with cell-based, cell-death assays are located in southern California. Both laboratories are familiar with the latest information about cell function analysis.

You may want to familiarize yourself with either labs information at there respective websites and have your physician call the lab in question so that they may further identify this protocol for your physician(s), and at the same time, educate them about the merits of assay-directed therapy, what the rationale is and what the data which support what is being considered.

http://www.rational-t.com/
http://weisenthalcancer.com/

By annebert
Posted November 8, 2009 at 1:43 pm
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Roger,

Ok I had to look these up. Caelyx is a well-tolerated form of doxirubicin (the drug is encapsulated in a plastic-like substance so it doesn't have as many side effects) and seems like a good idea. The taxol-doxirubicin combo is a proven way to go. Also the cedranib is a vascular endothelial growth factor (VEGF) inhibitor, so it acts like avastin - that would be very good since she has ascites. As pointed out by Sherry, platinum drugs will probably not be useful. Although you are concerned about the National Health, it does seem like they are making appropriate recommendations. The other thing that I could add is to ask if they are delivering the chemo straight to her addominal area (intraperitoneal therapy) - that has been shown to improve outcomes, although it seems harder for patients to take.

I researched the IPHC. Wake Forest is a good place and they have good cancer researchers, so I wouldn't discount it. It seems like something that has possibilities, but has not been researched much.

Quite honestly, if you can afford to travel to the US, I would think about going to one of the top places for cancer treatment - MD Anderson, Fox Chase, Dana-Farber, Johns Hopkins, for example, rather than Wake Forest.

I wish you both the best of luck.

Anne

By Executive
Posted November 9, 2009 at 4:39 pm
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Thanks Gpwalski - we have looked at the lab assay idea - there is a Professor Ian Cree over here who offers this under the National Health Service - At the moment there is still a slight puzzle as to why the ascites happened after such a good scan, which showed no measurable disease - and was only on October 7th - and the Marsden did not expect this to happen - since they had made a further appointment for us to see them again in January next year. The plan is for another CT scan in the next few days and then, based on the results to go Carbo/Caelyx - and review after 3 cycles (4 weeks apart) - mainly because Christine DID show a good response last time to the carbo/taxol regimin. I shall raise the assay test with them - and I thank you for your thoughts, and I will let you know how things go - best regards, Roger & Christine.

By Executive
Posted November 9, 2009 at 4:55 pm
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Hi annebert - Chris decided today at the Royal Marsden that she would not go on the Icon 6 trial - it was really for two reasons - the first being the distance involved and also that their recommendation of carbo/caelyx could easily be administered locally at the Northampton hospital - with a review after 3 cycles to see if surgery (which Chris has not had) would be possible. Obviously should ascites still be a problem they will need to rethink - however the doctor today felt the ascites will stop with the treatment they are recommending.
The doctor also gave a very convincing and logical reason to favour systemic chemotherapy above that into the abdomen - and the risks involved etc. Again, should there be a lack of response he feels there are other options available - BUT he feels there is a good chance of a response in Christines case.
We also have the possibility of an America visit in reserve as well.
Thanks for your thoughts and I will let you know how things get on,
All regards, Roger & Chris xx

By gpawelski
Posted November 9, 2009 at 7:48 pm
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Excellent Roger. You found out about Ian Cree on your own. You now know about your options.

The jury is out on how ovarian cancer spreads. As less is known about this disease than other cancers this has not been definatively answered and there is controversy among the ranks of researchers and clinicians. Many believe it does not spread via the lymph and spreads through cells shedding into ascites in the absominal cavity and then seeding in distant sites. It does spread this way but is probably not the only way as it is found in lymph nodes as well.

Sometimes with "standard" ovarian chemotherapy (like Taxol + Carboplatin), if cancer cells are "resistant" to this treatment, ascites could develop. Hopefully (through limited trial-and-error) you can get her ascites under control with Caelyx (doxorubicin) + Carboplatin (platinum) therapy, which is a reasonable empiric alternative treatment regimen.

Hopefully it will work out. If not, do raise the assay testing with them.

By Executive
Posted November 10, 2009 at 2:48 pm
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Thanks gpawelski - good thoughts and hopefully the way forward will fall into place. First - The next CT scan as benchmark to see what has changed. Remember the CT on 7th October did not register measurable disease - and the Consultant said he is somewhat puzzled - hence asking for the benchmark CT before chemotherapy starts.

Now here's something interesting. Recently Chris started using a tunnel infrared sauna for 45 minutes a day - its supposed to help "sweat out" toxins, and in addition in the past she has had sarcoidosis - which can also cause ascites - Now we wondered could the sauna have acted as a "trigger". The hospital does not really think so - but they admit they have never come accross anyone using these daily - so hows about that ?
Regards, Roger.

By lifeisgrand
Posted November 10, 2009 at 4:34 pm
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Isn't it also possible that the sarcoidosis might increase the CA125? I think that doctors who specialize are used to treating one thing at a time and when there is also another underlying problem that how it might affect the other is overlooked.

By Executive
Posted November 11, 2009 at 4:54 pm
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Yes everyone - I think that this has been checked - but I have to say that a lot of things have just stemmed from the original diagnosis - and I havefound on the web both peritoneal sarcoidosis and ascites being caused by it. It was just the lack of visible disease on the last CT scan that worried me once again. I guess that the new CT that should be done in the next few days will show what changes have happened since the one on October 7th. If there is not something definative I will push this forward once again. You are very right in saying that when they are only looking for one thing, they may overlook something else. I will keep you all updated - and thanks to you all for taking the time to help. I wish you all well on you individual journeys. Roger x

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