KNOWEDGE 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 Inno
Posted November 6, 2009 at 1:13 pm
Report post

Dear Roger
I have had six cycles with caelyx/carbop.
This combination is a very good option, but no magic bullet (trail results presented at ASCO May this year, but not yet published).
I have also discussed IPHC with my doc, I assume is short for IntraPeritoneal Hypertheric Chemotherapy.
He said that there is no evidence for a dose reponse effect of chemotherapy for ovarian cancer, and that argues against a benefit for intraperitoneal and heated chemotherapy. Lots of women have experience with IP chemo, some tolerate it well, others dont. I do not think I heard from anyone about experience with heated chemotherapy.

I am stage 3C with lots of tumor nodes on my peritoneum, currently treated for my first recurrence. Happy with caelyx/carb combination. Do precautions the first week to avoid sore skin .
Wish your wife a good treatment response, whatever you decide upon.
Inno

By Executive
Posted November 6, 2009 at 4:37 pm
Report post

Hi Inno (and also I acknowledge your best wishes
Milashka). IPHC is the Heated chemo version (The Hyperthermic bit means heated). Apparently cold it's called the Sugarbaker technique. I don't think it relates EXACTLY to Ovarian unless the peritoneum is also involved - but I have no medical background, so it's just what I have heard. Apparently the hospital in Salem (Wake Forest) have performed over 7,000 of these procedures - hence my interest in any knowledge I can get. Thanks so much for your concern - I wish you well, Roger x

By verlinda
Posted November 7, 2009 at 9:09 am
Report post

Roger,

A friend had the shake and bake procedure in Louisville, KY last summer for cancer of the appendix. She said it nearly killed her, but she's cancer free for several months now. After her initial chemo, the cancer had recurred by the time they did her first CT-scan.

From what she told me and what I've read, it is a drastic procedure. The patient spends the first several days after it in intensive care because it's so hard on the body.

Best of luck.

By mmtraynor
Posted November 7, 2009 at 11:13 am
Report post

I was diagnosed with Primary Peritoneal this time 4 years ago. I had the Acities and was told that it would come back. I had 18 months of chemo (carbo/taxol)during which time I did acupuncture. Found out later that Acpuncture makes chemo goes easier on you. I also drank the Essiac Tea from day one, and will never stop drinking.

I was stage 3C and when first diagnosed I did a lot of research. From my studies, I learnt that Germany was really big into IPHC and also MD Anderson at the University of Texas:

http://www.mdanderson.org/patient-and-cancer-information/guide-to-md-anders on/index.html

Marlene
mmtraynor@hotmail.com

I have been in remission since finishing chemo, March 2007

By Executive
Posted November 7, 2009 at 6:59 pm
Report post

Hi Marlene (mmtraynor) - Very helpful. We are having trouble understanding what starts & stops the ascites when there are no other symptoms. We are at the hospital on Monday to discuss the second round chemo - proposal is Carbo & Caelyx and I will be raising the ascites problem with them (and looking for answers) - interesting you had 18 months of treatment - they propose here only 6 cycles, 3 weeks apart. When Christine had the first 6 her CA125 went from 284 down to 20 - but of course did not stay there. I always felt there should have been more sessions. How were yours administered and at what frequency. Do you also know dose levels ? - Christines was 275mg Taxol & 565mg Carboplatin per session. Christines day as well embraces several "alternative" approaches (acupuncture & Essiac are both looked on by the medical profession as alternative). Heres her typical day - although it has varied a bit since the ascites because her appetite is down and she has a general feeling of fatigue.

A TYPICAL DAY FOR CHRISTINE

CHRIS IS VEGETARIAN EXCEPT FOR FISH & HAS VIRTUALLY NO DAIRY OR SOYA PRODUCTS

ALL HER WATER INTAKE IS CERAMICALLY FILTERED (Reducing Heavy Metals etc)

OUR Bedroom is Blacked out - we wake up naturally - NO ALARM - About 8 to 8.30am

On Waking - Cup of Tea - which is: REDBUSH (ORGANIC) with Rice Milk.

BREAKFAST: ( 9am )

PORRIDGE WITH RICE MILK - TWO DRIED APRICOTS & TWO DRIED PRUNES IN THE PORRIDGE WITH A TEASPOONFUL of BEE POLLEN SPRINKLED ON TOP.

(ONCE WEEKLY WE SUBSTITUTE WITH BRAN FLAKES OR SPECIAL K & RICE MILK & DRIED FRUIT.)

A CARROTT JUICE ABOUT 10AM

A GREEN JUICE ABOUT 12PM

LUNCH ABOUT 1PM (3 TIMES A WEEK THIS IS SOUP WITH CROUTONS)
OR A SALAD - EGG / FISH (DETAILS AT END) WITH "BUDWIG" MIXTURE ON IT.

A GREEN JUICE ABOUT 3PM

A CARROT JUICE ABOUT 5PM

EVENING MEAL ABOUT 6.30PM - WITH "BUDWIG" MIXTURE

THERE MUST BE NO DISCUSSION OF ILLNESS (INCL ON TELEPHONE) IN EVENINGS

MOST EVENINGS WARM RICE MILK OR PORRIDGE TAKEN TO BED ABOUT 11PM

TO WIND DOWN - Read or watch television : NOT THE NEWS !!!

SLEEP ABOUT 12AM

VARIOUS cups of tea during day - sometimes black - sometimes with rice milk.

SNACKS - FLAPJACK BARS (ORGANIC)

NUTS EACH DAY IN AFTERNOON: BRAZILS /ALMONDS / WALNUTS

IN ADDITION - CHRISTINE DOES LYMPHATIC DRY BRUSHING EVERY FEW DAYS
(Robust Strokes of rounded end brush TOWARDS heart around Lymphatic system area).

DETAILS OF INGREDIENTS – ALL MUST BE ORGANIC

CARROTT JUICE: FOUR CARROTTS, then in juice stir in teaspoon of VITAMIN C POWDER.
(This should make about 8 fluid ounces. )

GREEN JUICE: ONE STICK OF CELERY, QUARTER OF A CUCUMBER, THREE FLORETS OF BROCCOLLI & A PINCH OF TURMERIC. (The turmeric is to aid absorption).

BUDWIG MIXTURE - Based on Joanna Budwig Protocol. (daily amount)
4 OZ Organic Low Fat Cottage Cheese blended with 5 tablespoonfuls of Organic Flax Oil

NUTS: 5 WALNUTS, 12 ALMONDS & 6 SHELLED BRAZILS per day. - ALL ORGANIC.

LUNCHTIME SOUP: This is from the GERSON protocol to strengthen the kidneys.
(MOSTLY 3 LUNCHTIMES A WEEK) Vegetables NOT peeled – apart from the onions.

2 LEEKS, 1LB POTATOES, 1LB TOMATOES, 2 STICKS CELERY, 2 ONIONS,
GARLIC if you like it (we put in 4 cloves) and we also add a low salt vegetable stock cube.
This is all SIMMERED (NEVER allowed to boil) for up to 3 HOURS and then,
whilst still hot, reduced with a hand held blender to a consistency you like.

We keep this in the fridge and use within three days.

EVENING MEAL: Variety from: Oily Fish / Omelette / Beans on Toast / Pasta Bake /Eggs / Jacket Potato / Vegetarian Sausage (not Soya). All with salad or greens.

Christine also brushes her Lymphatic system every few days – with robust strokes from a rounded end brush.

IF we go away or out for the day we TRY to stick to this - but missing the odd day is NOT A SIN - Life is to be enjoyed - as is the OCCASSIONAL treat (EVEN A CHEESE SANDWICH !!!!!!)

Christine also takes a daily infrared sauna (we brought this for £300) (although we have stopped this at the moment - we wondered if this could in any way trigger the ascites ? ) and also many types of supplements following advice from her integrated advisor at Cancer Options in Nottinghamshire. These cost about £100 ($150) per month and I can forward details of all this if you wish – but as its specific to Christine it should be treated as information only. If you go to someone like Cancer Options they will put together your own supplement programme.

A word of warning as well. Recently Chris was told she needed extra protein to keep her weight up (obviously draining fluid diminishes weight as well.) She is 5ft 4" and weighs 8 stone 4lbs (14lbs in a stone). She was advised that Goats milk, butter and cheese would be good. However with the ascites she had terrible stom,ach pains and diarroah (spelt wrong). Well it turns out goats cheese is unpasturised and also the pack says must be eaten in 3 days, which we did not know. It appears that means a high risk of Listeria - and Cancer patients are very susceptible to this. We think that is what she had because she kept "tasting" the goats cheese in her throat. We asked the hospital and they said there was no other reason to feel like this they could think of.

Anyway, thanks once again for your concern Marlene - I wish you well, and if you are able to answer those few questions on Chemo doses etc that would be great. Regards, Roger.

Welcome to Inspire!

Explore topics in this discussion:

6 replies

Add to the discussion

OCNA on Twitter

Group leaders

You