I’ve seen my oncologist today for results on my latest CT scan. It’s showing 2 new growths in addition to several others which have been slowly creeping in which weve been watching and waiting on. I’ve been on Letrozole for few months which hasn’t worked.
One of the new ones is in my left pelvic area, psoas muscle where I’ve been experiencing pain and discomfort for some time. So time now to start next chemo cycle. However because I’d been having these symptoms but the growths have only just shown up she thinks the scans may be under recording and is suggesting that I go straight to Gem/ carbo and not Caelyx but says ultimately it’s my choice.
I know the gem/ carbo is meant to be more aggressive combination and probable hair loss again with it.
I’m also thinking of second opinion now as my oncologist never instills confidence but I tried to do that before with Dr Bannerman who was happy to take my case but my present oncologist made it very difficult and uncomfortable for me to proceed on that route.
Any thoughts or comments from you re the two different combos and any advice would be so helpful.
I’ve been in this recurrence for 2 years and think I’d lulled myself into false sense of security but now it’s hit me, the reality of OC is well and truly back.
Love and hugs to all you lovely ladies going through your own struggles with this awful disease
Claire xx
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Barmycharm
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I have just started gem carbo after 3months of watch and wait in which time my symptoms worsened. Lower pelvic discomfort and feeling internally bloated in the abdomen. Had two CT scans in that time, the first was too early to be definitive but the second one showed clear progression. Oddly, the lower pelvic area where the symptoms were most pronounced shows virtually nothing. Based on my symptoms, rising CA125 and elevated liver enzymes, the decision taken to start chemo. This was before the second CT scan btw, which I got the week after I started chemo. Within one cycle, my symptoms have eased considerably and my CA125 has started to fall. You don't lose your hair on gem carbo. It's also a matter of debate that's it's aggressive. I've had it twice now. Much more fatigue this time round. It was also v rough on my veins first time, so I got a port fitted which is really helping this time round. Swings and roundabouts. Hope this helps!
Thanks for your reply. I’m glad to hear you are managing ok with gem/ carbo. I’ve also got a lot of bloating and have had a lot of stomach pains but never sure if it’s connected to the cancer or IBS or another twisted bowel
This latest scan showed extended abdomen but didn’t pick up any growths there. However my oncologist is requesting another PET scan and MRI before I start chemo to be sure because there are several different areas of growth
I was diagnosed stage 3 high grade serous ovarian/peritoneal almost 2 years ago. I had 6 rounds of carbo/taxol/avastin and debulking. Following this my CA125 rose very quickly but I was not feeling ill. My oncologist sent me for a PET scan which revealed disease spread to lymph nodes in my chest, following this I was put on carbo/caelyx. The side effects for me have been minimal and I have had a really good result with CA125 down to 6. I have been on Niraparib since February.
I have no experience of gem but found caelyx much easier to cope with than taxol.
Any doctor who tries to prevent you getting a second opinion is a red flag! You are ENTITLED to a second opinion on the NHS. If your consultant won't help, ask your GP to refer you to a major cancer centre - that might be the Royal Marsden in London, the Christie in Manchester, Velindre in Cardiff etc.
You are definitely entitled to a second opinion. My Oncologist actually suggested I should go and see Prof. Jayson in Manchester,which I did last October following completion of carbo/caelyx in August 2022. I found it very useful. I had carbo/gem in 2020, and i believe that normally your hair may just thin a little, you probably would not lose it. For me side effects were not to bad apart from feeling tired towards the end of both these regimes. I wish you luck whatever you decide.x
I’m in my first recurrence too and will be starting chemo shortly. You sound like you are low grade since letrozole is an aromatase inhibitor. My sister is on that for breast cancer although they are switching her because she is having difficulty with it. It’s not been an easy drug for her!
What I’m doing is finding out everything I can about my mutations and looking ahead at trials. I’m luckily positive for FRa so that’s ahead. I’m keeping an eye out for the vaccine studies and the TP53 research. Also I’m looking at what other women with my version (high grade ovarian 3c neg brca hrd) have done. And researching it all! Herring together with other women who want to know. I believe I can get a long remission. If I can’t, it won’t be from a lack of trying.
Signs of recurrence began 2021 and has been progressing slowly but not in any regular pathway. I had thoracic surgery last year to remove a metastatic lymph node and a mass from my chest cavity. I have inoperable l ymphs in diaphragm and cardiophrenic areas. Now it’s progressed to liver area and pelvic psoas muscle and spleen area. I’m BRACA negative but have smother gene defect called RAD51D which is connected to breast cancer and hence my onc suggested Letrozole as a trial. However only been on it for 4 months and found the side effects in terms of leg pains and mood swings awful so I empathise with your sister.
I admire your tenacity but where do I even start to research?
I am looking wherever I can. Try OCRA ocra.careboxhealth.com also Clearity. They have cancer researchers who will look at your file including tumors and recommend some trials. Of you haven’t gotten tested for Folate Receptor Alpha, get that test. I also am interested in learning more about some of the moon shot trials (neovax) and the bead trial. (avenge-bio avb-001)
You’ve mentioned you recurrence is inoperable. I’m thinking it may be wise to make sure this is the case as I know Prof Christina Fotopoulou ( based at Hammersmith hospital, London) has operated on women when others have said it’s not possible. She would look at your scan results & be able to advise you one way or another. Maybe worth a go.
Hello thanks for your reply. When I said I had previously started looking into a second opinion that was with Prof Fotopoulou, I was getting muddled up. So I’m just about to approach her again to ask about the inoperable tumour on my diaphragm and also my overall case for her view on it all. I have 6 tumours all in different areas now so I think sone clarification is needed.
However I must say my present onc and CNS have certainly been on the ball this week. I already have MRI and PET scan booked in for next week, date for clinic discussion in 2 weeks and am already booked into the chemo suite for September
We fight on with a strength we never knew we had?! Good days and bad. I just try to keep thinking as long as they are offering another set of treatment then I’ve got something to work with!
Best wishes for this cycle of chemo and really hoping you have a good response xx
I just finished 6 cycles of the gem/carbo combination for my first recurrence. Gem is pretty tough - I would recommend getting a port. No hair loss this time around. Waiting on follow up CT scan to check the progress but my CA125 went from 74 to 11 to 5. Hope this helps. Blessings and prayers for you.
Yes get a second opinion. I saw Dr Banerjee bit was also sending clinical notes to Prof Jayson. She is incredibly knowledgeable and straightforward to talk to. She gave me positive hope that my prognosis may be years not months I had heard previously.
‘Two heads better than one’!
Good luck and hope you can get some rest this weekend ahead of the next round of treatment.
HiI also struggled with switching oncologists. It is nonsense that these doctors are insecure about second opinions. I get advice from more than one person in all big life decisions. Why do they try to set themselves up as Gods that must be obeyed. A sign of deep insecurity to refuse to collaborate with other people who are competent in your field. Please look at diet and exercise and therapy around female issues ~ gender identity, sexual abuse miscarriages, infertility, abortions. I think working on these issues also helps heal cancer of ovary/uterus/cervix.
Obviously still do the physical medicine, but since the chemo drugs cannot cure us we must look further afield. Body, soul mind and spirit. I turned down chemo when my cancer came back 6 months after chemo ended. Had pacli/carbo combo 6 rounds. Clean scan and then it returned.. Was offered pacli/gemcyt combo. Side effects would be worse and would buy me less time than the first round. I couldn't see the point. I want to live a joyful life not hobble around hairless and sick and then die. I don't expect you to make that choice but they know they can't cure us but they poison us anyway. Why?
Dear Barmycharm- I too have OVCA tumors on my left psoas muscle. I am told we are “rare”. You are the first person I’ve seen on here that is in the same predicament
My first tumor (near L6) appeared 6 years after my TAH and chemo. I had radiation therapy and it shrunk the tumor. Avastin kept it from growing.
A second tumor is suddenly growing and giving me some back pain (it’s pressing on my L3 vertebra). My Onco recommended radiation or immunotherapy. Since I did so well w radiation before, we agreed that was the best course of action.
That’s interesting! My oncologist tells me my recurrence is abnormal because all my tumours appear in different places to where they would expect! I am going to get a second opinion so I will definitely ask about radiation. However I have several different sites, in the thoracic , liver, heart areas and one on the diaphragm which they say is inoperable so I think that I would need the chemotherapy in order to shrink them all.
I have had some strange back pain for several months in exactly the spot of the psoas muscle so it must have been growing for a while but had only just shown up.
Are you in the UK? I’m so pleased for you that the radiation worked well for you before and sincerely hope it does so again
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First recurrence
Fistula
First recurrence and immunotherapy being offered!
