Hi all
My mom has clear cell carcinoma ovary she had been put on dose dense chemotherapy but she just doesnt seem to improve is her chemo working how do we get to know her ca125 was very low from the beginning and was last 15 scan is the only answer or thrre should be some improvement but she seems very tired even had swelling of legs and low grade fever too today please help on her last admission her heart liver and kidney tests were all normal i am feeling very concconcerned please help
Hi lovely your mum is probably suffering the effects of the chemotherapy.
How many doses and what type of chemo is she on? If you have concerns you need to speak to your mums oncologist or CNS. I’m sure if they felt things were amiss they would tell you and be doing further tests.
Wishing your mum the best with the rest of her treatment and hope you get some reassurances x
Hi dear Beewild she is on weekly taxol and carboplatin dose dense for 9 weeks was doing fine for last 5 cycles started having serious side effects like diarrhoea and her hb dropped to 8 gms at end of 5th cycle so 6th treatment was delayed for almost 10 days thanks for your reassurance they are planning a scan on 7 aug hopefully all should turn out to be good
Hi there. As Bev said, our general wellbeing tends to take a hit when undergoing chemo. This is in most cases caused by the treatment, not the illness (unless your mom has some active tumours or ascites left at this point). The next scan should confirm what her actual cancer status is.
I would keep a diary of all chemo side effects and complaints during this time, and get ger to discuss them with her oncologist, who can advise whether additional medication or chemo adjustments will be needed.
All the best to your mom. Chemo can be tough but worth it if it keeps the bugger away. Maus
Thanks Maus123
You are always so kind and you give very practical solutions thanks for your reassurance and advice i will surely keep a diary from now onwards i was scared because of her rare cancer but hopefully the chemo is killing the cancer cells God please help all the wonderful ladies in this group to endure this horrible uninvited disease and its treatment amen
I also have clear cell ovarian cancer. I had a successful operation but chemo didn't work for me and the cancer grew back during chemo. I think you should ask for a scan half way through.I was not scanned until nearly 3 months after my chemo. This was much too late and the chemo had caused kidney damage and it was all for nothing. I was offered caelyx but decided to pay for a consultation at the London Clinic and am now on a phase one clinical trial called Patriot which had kept me stable for 6 months so far. Chemo works for some people with clear cell but for many it doesn't so please push for a scan. My onc seemed to be unaware of the nature of clear cell. He also didn't realise that I needed to be on blood thinners indefinitately as clear cell carries a higher risk of clots and strokes as it makes the blood sticky.
Hi dear neona
Exactly this is my concern i have read clear cell carcinoma ovary is chemoresisant but our oncologist was pretty confident anyways the scan is due in a few days fingures crossed
Please let me know how you get on.
Hi neona
Its a bad news the tumor has not responding to chemo it has actually increased the lymph nodes have grown in size and thickening of bowel loops has also increased
Disappointing but there are other options so don't despair. Please keep us updated.
What other options do i have
You will be offered options by your onc. If you are not impressed seek a second opinion. I was offered caelyx or a phase 2 clinical trial miles away. I thought neither was promising and a friend on the facebook group recommended a top oncologist at the London Clinic. I decided to pay rather than wait though others have seen her on the nhs. It was she who told me I should be on blood thinners as clear cell carried a high risk of clots/strokes. Within a week I was seeing a dr at the UCLH Research Facility about a phase one trial- this is what I wanted as you are guaranteed to get the trial drug on a phase one trial. I was turned down for the first trial they put me foward for but got on the next. I travel from Cornwall to London every 2 weeks. It is hard but I am doing it.
I had clear cell too and I’ve found that my oncologist didn’t know much at all to the point of googling if they should give me chemo or not I’m two years down the line now but recently found out that radiotherapy works well for clear cell so at least I’m armed with the knowledge if the beast returns good luck with your journey and thanks for the information about blood clotting as I didn’t know that either. It’s just so sad when you know more about clear cell than the ones that are treating us do xx
Yes and it cost me £350 to find out what I needed to know!
That’s terrible
Hi shellygirl glad to know you have been in remission for last 2 years thanks for information what stage were you diagnosed and what treatment did you get
I was diagnosed 1c1 clear cell and I had carbo/taxol 6 treatments 3 weeks apart. Please let us know how your Mum gets along 🤗
I see you are getting a scan soon- that is great news- keeping fingers crossed for you both.
The other ladies have got this covered, it’s more than likely the chemo side effects, everything you’ve described brings back memories from my treatment days, I too was clear cell, it often has a lower CA125 reading and often isn’t indicative of any effects the treatment is having. A scan will show and progress and I’m sure one will be done when treatment is completed. If, however, she’s really unwell speak with the oncology team at her next appointment, I’m sure they’ll be able to put your mind at rest a little bit more and maybe offer some relief for her. Big hugs ❤️Xx Jane
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