CA125 503 to 493

[Lovis]

Should I feel discouraged as now the oncologist has reduced the dose my CA125 has only fallen 10 points. I have also stopped the day 8 gem. I had the first 3 sessions at the top dose and it went from 1058 to 503 but now it does not seem to be making any headway. What happens if it doesn't fall much further will I still go on to the Avastin as planned. Has anyone been in this situation. I'm on Gem, Carbo and Avastin. Should I be panicking? Lovis x

[Whippit]

Dear Lovis, There's a group of us who've been in touch via PM to compare notes on Carbo-Platin, Gem and Avastin. You're welcome to join in the conversations as someone might have a similar experience or ideas.

Did they reduce the dose because your bloods were low? That was suggested to my friend in Cardiff but for some it seems GCS-F injections to boost the white blood cell count or a similar type of injection do the trick, or a blood transfusion. My friend asked for GCS-F injections and was given them but we suspect that might not have happened had she not asked.

Several of the group missed their top-up Gem as it does knock the blood counts for six.

I was told that the CA125 count wasn't relevant because the Avastin would continue to shrink the tumours after the chemo stopped. My hospital don't tell me the number these days. I think you'd have to check with your consultant as to whether Avastin is at risk of being discontinued. Looking at the NCDF guidelines on Avastin for 2nd indication it says it's continued until it is no longer effective or unless there are adverse reactions (I paraphrase here). That would give me hope that in the absence of any contra-indications Avastin would be continued and might continue to help.

I just hope this, and advice from others who have experience of Avastin might help.

Love Annie xxxx

[Hidden in reply to Whippit]

I thought the idea of this forum was to share amongst everyone experiences with treatments for the good of all, not keep it private for the benefit of a few. Sums you up Annie xx. Feel free to report.y

[TrishLey in reply to Hidden]

This is not a forum for grudges and I think you are out of order. Adding a few xxx's doesn't change the tone of the comment. I'm rather sick of the xxx's after comments that are rather nasty. I have always admired you but this comment is not fair at all towards Annie. She is one of the most vocal supporters on the site and I have been here since 2011. Can we all build a bridge and get over it? The fact that 8 people recommended this comment is also disgraceful. Talk about bullying! I've been holding my tongue about stuff that is going on here but after a day having chemo and then back in A&E last night. Quite frankly I've had enough. If the remark was friendly banter between you then I apologise reservedly but I can't quite see the friendly side of it. - Trish

[Hidden in reply to TrishLey]

I think my main comment about sharing is a fair comment....the rest was me being friendly xxxxxxxx

[TrishLey in reply to Hidden]

Phew. I'm glad it was friendly banter and I am sorry if I was touchy. Heavily medicated woman on site here! Like I mentioned I admire you a lot so forgive my outburst. Sometimes its hard to read anything other than the words. However I know you understand, after following your journey with Sandra over the last few years, I know you have enormous amounts of compassion and empathy for the ladies on this site. I agree about sharing, I interpreted it as conversations that had gone to PM after the initial sharing had been done here on the forum. More like a 'How are you doing?" type of thing. Anyway glad thats cleared up and thank you for explaining it. Dare I do a xxxx Trish

[Lovis in reply to Whippit]

Yes, the bloods were low. I should have been given GCSF in the first place as I was given this on my first line chemo. I've had cycle 5 this last Tuesday and I'm trying to get hold of my oncologist to find out if I can have day 8 again. It's very difficult to get to speak to him. Lovis x

[iamstillme]

Hi Lovis are they going to re start your day 8 gem ? A lot of the time if having day 8 gem the GCS-F injections may not be suitable as there is not enough time to stimulate new cell growth before given chemo again. I am sure that the Avastin would continue as planned but the best person to ask is your specialist . Know sometimes we are frightened to ask the question for fear of the answer we have but hopefully on the case would give you the reassurance that you need. Have not been in your situation but can't appreciate how worried you must be and sending kind thoughts and wishes for you. I agree with Annie that as far as I knew you continued with Avastin until no longer working or causing side effects although my consultant says will be on it for a year or 3 years but hasn't decided yet !!

Lots love and best wishes

Ally xx

[Izzystep]

Hello Lovis. I was on the same chemo as you and I only got the day 8 top up once. Bloods didn't seem to recover in between treatments. I finished the chemo in April and CT scan showed shrinkage in the tumors of 1/2 and 1/3. My Avastin continues every 3 weeks. My CA125 when starting was 6600 and has dropped to 480 but has slowed down. I just hope it don't go up!

I have another CT next week and have been told That if all remains the same or there is shrinkage the Avastin will continue If there is growth they will re-look at other treatments.

At least your CA125 is going in the right direction.

Take care Irene xxx

[ScardyCat40]

I stopped the carboplatin and gemcitabine after 4 cycles as CA125 had levelled out. I carried on with the Avastin for a couple of months until a scan showed signs of what looked like early disease and my CA125 had also started to increase. We stopped the Avastin I was hoping to get on the MEK trials but did not meet the criteria.

I could have gone back on the Avastin but I felt much better off it so now I am on watch and wait for the next couple of months. I am really glad of the break

[TrishLey]

Hi Lovis.

My CA125 had a big drop at the beginning of this treatment then it went rather slowly at some times only falling 10/15 points. Don't be discouraged at all it picked up at the end and I finally dragged my self over the finish line at 29. I have been on Avastin since last Sept when it finished and am still on it. Even with a few new active nodes they are keeping me on it. Don't panic!

xxx

Trish

[Lynn2020]

I had 7 cycles of Carbo Gem and avastin and only managed the day 8 on the first two, second cycle took a delay of two weeks and injections to get the day 8. After that oncologist decided, on balance, delays or reduced dose, to abandon the day 8. Still hit my blood levels hard and needed injections to keep my levels up for the remaining cycles.

Mid point scan showed good reduction in size of lymph node so I was happy with no day8.

We were aiming for 8 cycles to make up for no day 8 but with constant border line bloods, onc decided to leave cycle 8 and go straight on with just avastin every 3 weeks. Doing ok, some stiffness, but getting fit with swimming and Qigong which helps a great deal, though needs a bit of pushing myself to get on and do it some days - like today....!

Lynn x

[Lovis in reply to Lynn2020]

Did you get your CA125 down within the normal range? Lovis x

[Lynn2020 in reply to Lovis]

Yes because my cA125 had risen but was not outside the 'normal' range anyway despite the enlarged lymph node on the scan - forgot to say earlier, I had the node biopsied and it was definitely OC cells.

Not sure how useful my CA125 is - was only 65 at first diagnosis.

I know there have been some conversations on here about 'wait and see' I like my oncologist and have every faith in him - he thought as it was small and localised ( no sign on scan of anything else anywhere) we would hit it hard .... I'll go with his thinking as long as it makes sense to me. I think we are all different and individual so may not be best for everyone - I am pretty fit apart from cancer!!

Xx

[TrishLey in reply to Lynn2020]

Hi Lynn. Quick question, what is Qigong ? Sounds interesting. x Trish

[Lynn2020 in reply to TrishLey]

Link below is good - I have done it for years, started with tai chi but you need a bit of space to practice at home so I changed to qigong. I always think qigong is a bit like Tai Chi on the spot. I do Shibashi qigong - 18 movements that you repeat 5 times each, it is easy to adapt to different levels of fitness and can be done sitting down on a chair if necessary. Very soothing and peaceful.

Xx

[TrishLey in reply to Lynn2020]

Sounds wonderful. I've been a bit down seeing my friends so active now its summer. This sounds perfect for me. Thank you for sharing xx Trish

[thesilent1 in reply to TrishLey]

I wondered that too lol. Ann

[Missfitz]

Hi Trish

I'm sure Lynn will reply but I've been using Gi Gong for a few months now - love my 40 min routine - and think that this website describes it well.

nqa.org

[TrishLey in reply to Missfitz]

Hi Missfitz. Thanks for the link That looks amazing! I'll check it out. x Trish

[Hidden]

My first and second gem blasted the hell out of the 125 but also my white cells. The dose had to be adjusted. I did miss one dose and then one was postponed at Xmas but they decided not to do catch up. Have stayed on Avastin every three weeks, two weeks ago, my oncologist was happy numbers were still falling. In the meantime, I do get an ache now and again in the area where the oc is but he says that is normal. I do what I can do, working again just reduced hours but the tiredness is something else. I have to pace myself more

[thesilent1]

Hi Lovis. I was carbo/taxol and my bloods took a hammering resulting in chemo dose being reduced. I noticed that my CA125 didn't have as dramatic a reduction as prior to this but you know at the end of chemo it was down to 21 from an initial start of 1608 prior to surgery and chemo and 3 months later when done by my GP it had fallen again to 15.9. Please don't worry too much about it. Ann xo

[HumbleD]

I am a bit too poorly to get back to you as on chemo at the moment. I was on carbo/gem and Avastin introduced on the fifth cycle. It was when I got to this stage that my CA125 really started to trend down and I finally got a reading of 12. My memory is pretty poor at the moment but I do remember that my second weekly dose of gem was at some point dropped due to poor blood results.

Remember the clinicians always see trends as important. I hope you are feeling ok during your chemo and I wish you all the best.

Love Wendy x

[thesilent1]

Hope you are feeling better now Wendy. Ann xo

[Lovis in reply to thesilent1]

Went through a depressed weekend but now feeling up again. It just gets you so down sometimes and everything feels so hopeless. It's so good we can all support each other as we all know how it feels. Lovis x

[Whippit in reply to Lovis]

I'm glad you're feeling better after the weekend. It does get you down sometimes. Friends here are a great comfort. xxx Annie

[thesilent1]

Glad you're feeling better. Yes this site is good for support. You don't feel so alone. Ann