Help please

Hi, me and my mum saw her onc. today. She said they do not think the caelyx is working and that there is only one other option for my mum-topetacan(?) and that the side effects are much worse and success rate very poor. Oncs attitude was awful. Mums ca 125 before starting caelyx was 704 (this was just after ascities was drained), after 1 tx of caelyx 1658, after 2 tx of caelyx 1999. I know it has gone up but it is at a much slower rate. I thought this was expected with caelyx ? Mum feels they have written her off. I also asked about supplements, in particular maitake d fraction and she was very dismissive. To her it is a job to us it is my mums life. Thanks for all your support over the past week or so it has been much appreciated, you've given me the strength to get through today. Love Sam x

[vegas2cr]

Sam I am so sorry you and your Mum are going thru this... I don't know much of the UK system but can she have a consult with another oncologist?  Just sending you hugs across the miles from Costa Rica  Ronni

[SimplyStar]

See if your Mum will qualify for the OVATUREtrail  it is world wide and sounds good  web site is OVATUREtrial.com

[alanpvegas]

You should be able to go to another oncologist (ask around for a good one or http://www.nhs.uk/Pages/homepage.aspx ).  You don't have to stick with a bad oncologist...my mom has a new one who is absolutley wonderful compared to the last...very compassionate.  

Despite the fact that some countries oustide of the U.S. may not have all the "latest and greatest" drugs, there is still plenty of combinations to use that can have similar effects.  In other words there is always something that can be done.

Well, Maitake D-Fraction is my fav so I have to comment :)  If the oncologist is dissmissive of it that shows signs that the physician wants to be in charge.  A good oncologist will let you steer the course and they will be by your side giving you their advice and experience.  My mom's last oncologist's partner listened to my explanation of Maitake D-Fraction and read the info and gave it a go...so there are those out there who DO listen :)

Best of luck...get her another oncologist.  Let me know if you run into trouble, my brother lives in Scotland so I can ask him too.

[rmarie]

This is a terrible disease that your mother is fighting, and unfortunately there are no good answers to any of our questions.  I would wonder if the Caelyx helped your mother's ascites, and if it halted it, then didn't it work?  I checked for the Ovature trial and it is not in the UK at this time, only US, Australia and Belgium.  My thoughts are with you.  

[Conquerer]

[Conquerer]

Ovature is in UK but under a different name.  Look under the drug name.  Good luck

[freshair]

Sometimes Doxil doesn't kick in until after the 4th treatment. Has she had low dose Taxol?  There are a lot of drugs . Dr. Goodman had posted a list of all the drugs in a recent post in the Dr. Forum. Try posting a question to her with your mom's history and drugs that she has taken. That way you can get a good opinion from UMASS. Good place.

[freshair]

Sam,
The only other option is not just topotecan. Although it seems standard practice to use topotecan after doxil.

This is for you to get an idea on someone's drug picture--my drugs so far have been:
2003 Carbo/Taxol;    2005 Carbo/Taxo;    2006/2007  Doxil,  then low dose Taxol, Now I am on Carbo/Taxotere (I wanted this instead of Gemzar or Topotecan) It's working somewhat but I could become resistant to it and hoping I don't. It's such a gamble.

Here are the other drugs mentioned by Dr. Goodman.

as far as other therapies, here is a list of chemotherapy drugs that have activity in ovarian cancer:

carboplatin
cisplatin
oxaloplatin
taxol
taxotere
adriamycin
doxil
cytoxan
hexamethylmelamine
gemzar
topotecan
tamoxifen
arimidex
megace

experimental drugs
avastin
alimta

[jillianth]

Sorry to hear about your awful experience with the dr. My mum had a very caring and compassionate oncologist. I would definitely try to get another opinion. Your mum is very lucky to have you by her side through all this.

[EchoUK]

Hello Sam,

I suggest that you both go to your doctor and ask for a second opinion which you are perfectly entitled to do.

See here -

http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=910

With best wishes to you both,

Ruth  xx (in the UK)

[sam in the UK]

Thank you for your words of encouragement and advice. I don't know what I would do without this forum. Love Sam x

[silver&gold]

[silver&gold]

Hi Sam ,
I am so sorry to hear of your bad experience with your oncologist . Where abouts are you from in the UK ? I live in the south and there are several good cancer centres around this area, if you don,t feel happy with the way in which your mother is being treated you should visit your GP and ask to be referred to another cancer centre. This is your right , your mother deserves to be treated with compassion . Good luck and take care , Angie xx

[sam in the UK]

Hi Angie, We live in Middlesex just outside London. Mum goes to St Lukes Cancer Centre in Guildford. Where are you being treated ? I'm wondering if its the NHS and that there is a limit to the number of chemo drugs you are allowed ? Can I ask what chemo drugs you have received ? Many thanks love Sam x

[silver&gold]

Hi Sam ,
I  also attend the St Lukes Cancer Centre in Guildford and I am under professor Thomas . I  also found them to be very anti supplements and vitamins of any kind and was advised to stop taking them during chemotherapy , I was told that because chemo has to go through the liver , it is too difficult and puts a strain on the liver to process supplements as well . I finished chemo in September 2005 and had 6 cycles of taxol and carboplatin  for clear cell ovarian carcinoma . What type , stage and grade is your mums cancer ? . I am aged 44 and live in crawley near Gatwick Airport . Several people that I have met attend the Royal Marsden Hospital in Surrey and Ithink it is a cancer research Hospital , you maybe able to transfer there if it is not too far from you . I would definately speak to your GP about things as your mum should never feel that she has been written off its apalling ! . Please let me know how you get on .  Hugs to you and mum , Take care  love Angiexx

[Kimchi]

Have you been cancer free since you stopped you 6 cycles in 2005? Do you now take suppliments? What Stage were you diagnosed with? Have same type of cancer Stage 4 Oct 2006, have and still continuing taxol/carbo/ 10 times so far.
Tks

[pollycarmen]

my mom was just diagnosed after the gyno thought it was only fibroids. now she's waiting on auth from insurance for a hyterectomy. she has ascities that has never been addressed and is keeping her from eating and making it difficult for her to walk. No meds yet, nothing has been done. she was diagnosed Aug. 14th. Any suggestions?

[SimplyStar]

Get to an Onocologist ASAP,  how was she diagnosed without surgery?  Call the insurance company and demand action  like NOW , the sooner she is bebulked and staged  and started on chemo the better chance she has.

[Kimchi]

Had same problem, thought I had ulcers or parasites..did not notice the bloating/swelling of belly cause I was at the acupunturist every week to release gas.  I did not have any pain just constant gas and diahrea.  I avoided fried foods, whites (bread, rice, noodles,sugar),,took antacid really helped. Knew that something was wrong because symptoms became chronic and had lost about 20 pounds too fast, so started to take vitamins and supplements to built up my immune system.  Have been on them since. Suggest you make sure your Mom starts on these now...
I would call the insurance company everyday, twice or more times a day and stress the urgency. Star is right, you have to catch this early!! wishing your Mom good news..Keep us posted.