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Consultant meeting today.

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

Well here mum goes again, we are going to try doxil called caelyx in the uk. Let's hope this works, fingers crossed, it has got to work.
We asked about mums omentum and he said they removed as much as is safe to remove,and that there was no visible trace of cancer on what was left, I always understood that they removed the lot! The beast has regrouped and grown traces of cancer over what is left of the omentum, this worries me greatly.
I asked about intraperitoneal chemo and he said it wasn't standard in the uk and that there was no where that did it, but he will look into trials as there some in the uk using this technique, I mentioned that in the states it seemed standard practice!! He said he had worked in the Canada and the reason they did was to charge more on the bill to the insurance companies!! Thoughts please!!! I have read it is a lot stronger, to me that equals better!!!??!!

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

Liz,
IP chemo is usually done as a front line treatment and it is usually a one shot deal. I did have 3 rounds of IP chemo as part of my inital treatment. It is usually done with a platinum based medication. Here is what Memorial SLoan Kettering write on their website:

For most women with advanced ovarian cancer who can have optimal debulking surgery, IP chemotherapy following initial surgery is extremely beneficial. One study conducted by the Gynecologic Oncology Group showed that women with stage 3 ovarian cancer who are given a combination of intravenous (IV) and intra-abdominal chemotherapy, following the successful surgical removal of tumors, experienced a median survival time 16 months longer than women who received IV chemotherapy alone.

That being said, I recurred about 7 to 8 months after an optimal debulking surgery, aggressive frontline treatment that included 5 rounds IV carbo/plan and 3 IP cisplat/carbo. I tolerated all my treatments well and never had to delay treatment or needed any transfusions.

I don't believe IP chemo at this point would be beneficial to your Mom. Of course I am not a doctor!!! Since Mom recurred quickly after stopping treatment she is probably platinum resistant. She would most likely benefit more from non-platinum medication. Why would they pump her body full of platinum drugs if they aren't going to work? Second line treatments DO WORK for some women. There are lots of options out there. Doxil, Gemzar, Toptopetcan and of course Taxol. There are clinical trials for platinum resistant women too. Google your nearest research hospital and see what clinical trials they have going on for ovarian cancer. I like to be prepare ahead of time. If I fear a medication isn't working for me I start looking at the trials going on before hand.

GOOD LUCK!!!

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

I am in the uk , I have been looking for trials, but there dont seem to be many,and the ones that are running she is not eligible, in the us there are tons!!! The consultant is going to look at trials for mum but I don't hold out much hope :(
In another post childofthestars seems to think there os a professor in the uk doing ip , I am going to talk to mum to see if she wants a second opinion from this guy.
We shall see what happens,i believe the us are streets ahead of us!

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Please try and get your mum to see Prof Rustin, he heads up the cancer centre at Mount Vernon Hospital and is very up to the minute on new treatments, it's definately worth a phone call.
M x

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

Thankyou so much for the advice , we are now being referred to prof Rustin. Mum is putting of her scheduled chemo until we gave seen him. We've been told it should happen quickly, and that she should expect a letter through the post in about 2 weeks. Watch this space!!! Xxxx

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

I'm so pleased she is seeing the Prof. We may even b there at the same time I'm going for my first 3 month check up on 1 March! Where in UK r u?
M x

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

I live near lowestoft in Suffolk , so a little way from you, my hubby worked for a demolition firm based in watford, called cantillon.
We are waiting for her appointment to come through , as soon as I know I will let you know. Thanks for the advice , he may well be of the same opinion as Bizwos but , I feel he seems to be quite into to trials etc which I think could be beneficial, I think we need to look at giving anything ago , it has recurred so quickly :(
Is he a nice guy? I looked up his profile and he appears to have a very kind face. I only ask as mums first consultant was an absolute pig!!!! We felt lime we couldn't ask him anything, i think he thought he was god!!!

Liz x

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Liz
Prof Rustin is a really lovely man he has a kind but realistic way about him and is happy to answer any questions. I drove him mad before I started chemo and he was very patient and helped me come to the right decision about treatment. Does your mum have private healthcare?
Let me know when she gets her appt.
Michelle x

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

No she doesn't , I like the sound of him , I like realists! Mums surgeon was very upbeat and was talking about if she had to come back for chemo in 10 Years, I knew at the time he was trying to keep her spirits up, but it wasn't realistic what he was saying, well not for 80% of women anyway, and especially as it is a high-grade type that she has, I thought it was totally unrealistic.

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Let me know when your mum's appt is perhaps we can meet for a coffee.
M x

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

Hi Michelle,

Ok this is where we are at! Mr Bizwos rang mum today ,he has spoken with the professor, and he has told him he only does IP chemo for women who live within an hour of the hospital and only if they are cancer free???!!??? I don't understand why you would have IP chemo if you were cancer free, I am lost.
Anyway the outcome is that mum is happy to press on with the caelyx (doxil) .Personally I would still have liked to have spoken with him , just to get a second opinion, but she seems to be happy to go with what mr bizwos is saying.
From what I have seen caelyx seems to be standard second line treatment, I am sure Tina is on it , she also has PPC same as mum , and it is her first recurrence.
We are taking mum on a ski holiday with us in March , so she will start her treatment on the Friday we get back 18 th march.
Thanks for your advice, I am gutted she can't have IP but I am a bit confused about the you have to have no cancer part!!!!!

Thanks liz xx

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Hi Liz
Thanks for the update - how odd! I really don't understand the reasoning either but I WILL ask him when I see him on 1 March it doesn't make any sense!! Also I wonder why u have to live within an hour of the hospital??
Michelle x

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

Nice one I would love to know!!! I really don't understand it, but I am sure there is a reason for it, but would love to know the reason!!!!

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Just been reading your posts with interest. I was beginning to get quite excited about the propect of IP chemo as I understand it is a very effective treatment. I am so sorry you hit a brick wall.

You were right I was on Cealyx but unfortunately it didn't suit me and I was quite ill with it. I ended up in hospital and my doctor took me off it. BUT that doesn't mean it won't work for your mum. I am back on carbo/taxol which is really doing a good job in bringing down my numbers.

I really hope caelyx does the job for your mum. I will be also interest in why you can only have chemo IP when you don't have cancer????????????????????????????????

Tina xx

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

Hi Tina.

I didn't realise you had to stop caelyx , but I am glad your numbers are falling, yippee!
How long did you have between your platinum treatments?
Yes interesting what the professors response will be to Michelle ! I cannot wait to hear what he has got to say!!!I would love to go down there , but mum seems happy to plough on, like she said he wouldn't treat her anyway , we don't live near enough. I like the sound of him though and have researched him on the net he seems to be big on clinical trials, and i think we need to look at giving anything a shot!!!

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I finished carbo/taxol March 2010 and my numbers went down to 34. In October they had jumped to 71 and then to 1,280ish. He put me onto the regular 2nd line treatment which is Cealyx but straight from the 2nd day I was so so sick. After 2 weeks my temp spiked and I was admitted to hospital. I had a CT scan cos my breathing was bad and found out I had fluid around my left lung (this is how my cancer goes when it is bad) I suppose this told my onc that the caelyx wasn't working, that and the fact I was so ill. So he decided to try me back on carbo/taxol and hey-0 it is working. He did say you have to have 12 month break in-between carbo/taxol treatments but because it worked so well for me the first time he decided to try it.

I am living proof it is working so far.

I hope your mum's chemo works for her

Tina xxxx

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

I'm so glad it working again for you Tina , its not a nice place to be , when you are unsure if the next drug is going to work or not, we shall have to wait and see.
Mums tummy is filling up again , she is in to have it drained on Thursday, you mentioned your lungs, when i spoke to mum this evening she said that she could feel the fluid more under her bust, I was concerned when she told me this , i remembered you mentioning your lungs before, do you think it is creeping towards her lungs, and she should get this drained quicker?

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

The fluid can pass through the diaphram and enter the space between the lung and chest wall. Because this is effectively metastic (spread to another organ) my oncologist staged me at stage 4. But the cancer was only in thefluid and not on an organ. You need to mention this to the oncologist and they can easitly find out by a chest xray. It be drained just like the ascites.

The real sign fluid is around the lungs is her breathing. That is how my cancer was spotted. I am/was a runner and I first noticed my fluid when I was running and couldn't understand why I was getting so breathless. I went to the GP's and he diagnosed a chest infection & gave me antibiotics. When they didn't work he sent me for a chest X-ray and they saw both lungs were full of fluid. The rest is (as they say) history.

I am pleased your mum is gettting the ascites drained and she will feel so much better when it is gone.

Take care Tina xx

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