I am posting this message on behalf of my mother. She is 73 years old and was recently diagnosed with OC (in Dec 2011) - stage 4, grade 3. I live in England but my mother lives in France (we are both French). A friend recommended this website and I have found all your posts/messages both very informative and heart-warming. You are all AMAZING women.
Bizarrely, I have not found any such support group or website for OC in France.
I am very close to my mother and I'd like to do what I can to help - all be it sometimes remotely- and part of this involves getting information from other patients... I have a few questions which I thought I would post.
I have spent time with my mom in December and January and am planning to spend more time with her in March.
All of this happened so very suddenly....
Background:
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My mother's cancer seems to have grown without many symptoms - she was only concerned about a cough that did not go away over the past year or so - until December 2011 when the ascites developped in the abdomen , along with a pleural effusion and pains in the ovaries. After a couple of scans, she had emergency surgery on Dec 22nd during which both ovaries/falopian tubes/omentum were removed. Surgeons also took a lot of biopsies/samples to be analysed as they found cancerous nodules in the intestine and around many organs.
Since surgery, she had to have her right lung drained as the pleural effusion had filled up with liquid and 1.75 litres of liquid were taken out. She also has an irritating cough with some mucus.
She is now having chemo. Plan is 3 cycles of 3 weeks with chemo on week 1 and week 2 of each cycle. and week 3 "off". She has just completed the
second cycle today. When the third cycle is completed in march, the surgeon might consider another operation if the existing tumours have shrunk and it it worth operating. There is some hope in that the CA125 has dropped from 267 to 138 after the first cycle of chemo...
CYCLE 1:
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week 1: carboplatin/taxol/avastin
week 2: taxol
week 3: no chemo
After cycle 1, her CA125 dropped from 267 to 138.
CYCLE 2 and CYCLE 3
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week 1: carboplatin/taxol (stopped avastin)
week 2: taxol
week 3: no chemo
My questions
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1 - LUNGS: has anyone had the same effect to their lungs as my mom has ? Did they get any specific treatment for the lungs and /or cough? My mom is really bothered by her constant coughing. Has anyone had their mucus analysed?
2- AVASTIN: the oncologist in France stopped giving AVASTIN after the first week of chemo on the basis that maybe it was too aggressive for my mother's tumours and might generate an hemorrage - has anyone been given that information ?
3 -PAIN & DETOX: my mother has pains in her abdomen and around the diaphragm which seem to be cancer related. I have found some information online about using near infra-red lamps to deal with pain. The infrared lamps would help reduce inflammation and help with bood circulation. Has anyone heard of this?
In a similar way, has anyone heard of having a sauna which would make you sweat and thus de-toxify?
All your comments are welcome!
Warmest regards to all
... I can't help but think that my mother's cancer has made me even more aware of how wonderful some people are.
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You are being a great support to your Mother! I cannot answer any of the questions you pose, having not had chemo, but maybe a call to the Ovacome nurse helpline will bear more effective answers for you. It's (UK number) 0845 3710554. They are very experienced and will undoubtedly give you good advice to relay to your Mother. If there's no-one there in the office you can leave a message. Just wanted to send my best wishes and if you type a key word into the search box at the top of the page, there may be some answers on here from previously. There are so many women who have experienced so many different treatments, there may well be an answer hidden away here somewhere.
I can very much sympathise with your others situation as I live in Spain and get no help at all. I have my chemotherapy at hospital then I am on my own. Thankfully I have a good private Dr who has worked in Oncology in the UK and who speaks perfect English who is my only support here.
This site I joined not so long ago and find it very informative and helpful and the ladies are just so kind.
I am late stage ovarian cancer and am into my 6th year of fighting the disease. I will have been on chemo constantly now for 4 years in May, as I am on maintenance treatment i,e, if I go off chemo I am dead !!
I am also just about, I think, the only person who has experience with Avastin. I was on it for 2 years and 10months and I am amazed at your Mothers Onc saying it is too aggressive. I found it the best treatment I have ever been on. It isn't chemo, it is a drug that stops the blood supply to the tumours (well about 98% of the blood supply). Therefore it doesn't kill good cells like chemo does. In the period I was on it, it put my secondary lung and lymph node cancers into remission and shrunk my liver, kidney and abdomen tumours by over half. The only real side effect I was told to check for was perforation of the bowel. I did suffer and still do with a husky voice and also nasal problems, but being too aggressive I am amazed !!
I will add that although I had secondary lung cancer I but never had a cough. The only time I suffered with problems with my lungs was after surgery when I had fluid on the lungs. The surgeon wanted to remove it but the oncologist wouldn't allow that and it was gently treated with physio and just went away.
I wish you and your Mum luck, be there for her she will need you behind her. Is your Dad still alive to support her whilst you are in the UK ?
Dear Anna - Thank you so much Anna for your long reply, which provides me with good information.
I wanted to clarify what my mother's oncologist meant by Avastin being aggressive - it is indeed related to the risk of perforation of the bowel as you indicated, resulting in bleeding and urgent surgery. My mother has tumours in her bowels. I think it might also depend where the tumours are placed in the intestine (ie how close to the lining) as the tumours would pull on the lining in the process of shrinking.... It would appear so far that the avastin has worked for my mom and therefore I would be inclined to ask if she could go back on avastin if the tumours have reduced in size.
My mom's cough is constant and it increased after the drain of the pleural effusion. The radiologist initially took a small sample to test whether the liquid for cancer (although there was not much liquid at the time in the effusion) and then a week later my mom had to get the drain because the liquid had increased so much (alsmost as if the first sample they took made it worse). It sounds like your oncologist was right to refuse the drain.
I am very interested in the physio that you did - what type of exercises did you do? Was it with a physiotherapist?
My mom would lalso like to know if you had several operations. She might be offered some further surgery but she is not 100% sure it would be worth it.
Concerning my dad, he is alive but not really able to support my mom in that he contributed largely to her stress before she became ill and would not be able to look after her in a kind way. My mom has decided to stay with her sister who is really wants to help my mother and support in every way possible. In that respect, my mother is fortunate that she was able to move in with my aunt.
Anna - I do feel for you. From your comments on this site I can feel the love of life in you so I do wish you all the best. Thank you for sharing your knowledge and experience of OC!
At the moment I am wishing that I can spend a few more years and obviously good moments with my mother.
Love - Cecile
This is only general advice - everyone is different. Avastin can cause blood pressure to rise and it has caused haemorrhage.
The drop in your mother's CA125 is a good sign.
A cancer diagnosis is a huge emotional shock. Your mother might become depressed or very anxious. Either of these can be treated medically and with the various forms of relaxation therapy that are around. Also, reading a really good book, watching a favourite film, listening to music can help, as can any hobbies that your mother usually enjoys, e.g. knitting, baking. Moderation is key: your mother will have limited energy and she needs to conserve that so that she does not get over-tired.
I would ask your mother's oncologist if s/he could use the dose dense protocol, which has been shown to be more effective than the standard protocol with similar side effects. I don't know whether the regime you quote is dose dense or not, usually dose dense is three weeks on, one week off.
Ovarian cancer does in its late stages cause pleural effusions, which can be easily treated if neccessary. Often the effusion will go away as a result of chemo, as does ascites.
As for pain, your mother will still be recovering from the effects of surgery. It takes months to heal. Her pain should be treated, the problem is that pain relief causes constipation, which is very often a problem during chemo. Women often find tramadol better than the opiate based pain killers. The constipation usually responds to Movicol, but some women are fine on a bowl of prunes for breakfast.
As for detoxing, the whole point of chemo is to create a toxic environment which will kill the cancer cells, so for the time being detoxing is not a good idea. Also your mother needs to avoid public facilities because of the danger of infection.
But a bath at home with luxurious bath oil is good.
Having been through chemo, I would try to ensure that your mother has someone to help her at home, so that she can rest and does not have to bother with housework. It can be depressing if your home becomes dusty and untidy. Encourage her to do as much as she feels comfortable doing, but to take plenty of rest so that her body can endure the chemo. Encourage her to eat, and make sure she has little treats that will encourage her to eat. It's not healthy to lose a lot of weight, though it is easy to do if the chemo causes nausea, as it usually does.
Everyone responds differently to chemo. Many women rest during chemo weeks and recover during the rest weeks. A little gentle exercise, e.g. a short walk, is a good idea.
Thank you chrystynh for your reply and advice - always very welcome.
As per my reply to Anna, my mother is fortunate in that she has moved in with her sister who is really devoted to her and helping her greatly. So she is well looked after in terms of food/ and lovely, clean and tidy house to live in.
Her chemo at the moment is 2 weeks on and one week off - I am not sure whether that is dose dense or not.
I am encouraging my mother to watch good movies and I think today she went to see "the Artist" at the cinema. Her eyes are very tired so she cannot read easily anymore but I also got her an audiobook on meditation and might consider getting her other audio books. .
My mother has been taking some magnesium supplements (magnesium citrate) which seems to help a lot with constipation. In terms of pain killer, she is taking topalgic and paracetamol which seems to help with the pain. This week, which is a week off chemo, the pain has decreased.
Hi Cecile, Sorry I haven't come back on your post but I have been so ill this week, I spent most of the past 5 days in bed and no time at the computer.
Yes can now fully understand your Mother's Onc. views on Avastin but I know on the trials my Onc. ran the incidences of bowel perforation were NIL. I think it is one of the side effect they have to warn you about.
My physio for fluid on the lung was very gentle as I was in intensive care and just out of maor surgery. It was just gentle squeezing of the lungs and helping me get the stuff up and cough and it helped.
I am an asthmatic and do get congested if I have a chest infection. A physio showed my husband exactly how to deal with this with treatment that would be given to someone suffering with cystic fibrosis. Simply the patient lies on their stomach with their head lower than their body. Using cupped hands the physio then - hammers isn't quite the word to use here, but I don't know what else to use - in the area of the lower shoulder blades. This always helps move the mucus etc., upwards and it can be coughed up.
But of course fluid on the lungs, only after surgery, I have never suffered with and the other ladies seem to give good advice. By the way I am back on my beloved Avastin - I hope it works !!
Thank you for the information about the physiotherapy. I think it would be good for my mother to try.
I have read your other blog and I am glad that you are starting to feel better. I am happy for you that you are getting the port which seems like an excellent idea - my mum has one - and the nurses told my mum that it was easier to use when the patient was thin !
As you said, avastin could be very efficient again for you. It also sounds like your oncologist is nery supportive and is doing some research for you into alternative treatments.
My mother is starting her third cycle of chemo and will have her blood and CA125 results again next week. They have stopped avastin for her after her first chemo so we will see whether that has an impact on next week's measure of CA125. It seems that the risk of perforation of the bowel is only 4 to 5% in general - although it might depend where the tumours are placed. I would tend to think that she should "push" to get some
more avastin.
My thoughts and prayers go to you. Are you able to watch any good/fun movies?
I think most ladies on here who have read my posts really do know how much Avastin has done for me. I was given months to live and I was on Avastin or 2 years and 10months. I hope it comes up trumps for me again. The portacath is going ahead but there is urgency to get it fitted as the Avastin starts next week and obviously once I start on that - no medical intervention at all. The Avastin would have to be withdrawn for 6 weeks and I don't want that. The problem is the platelets were so low, I have a blood test tomorrow to see how they are, if still low I have to have a platelet transfusion before they can put in the portacath.
I have a wonderful Oncologist, couldn't get better, he is so kind and so supportive and he listens and talks, so important.
Piet and I are not into movies, Piet is registered blind, with limited vision, so movies, TV are not too good for him, he misses a lot. But we keep busy with 4 cats and 1 dog and having such wonderful weather at the mo.
Good luck with Mum's results, please keep us posted.
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