Advice needed please : Hi ladies, I’m really... - My Ovacome

My Ovacome

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Advice needed please

Tay100 profile image
17 Replies

Hi ladies, I’m really confused. I am about to have tomorrow the last of my mop up chemo after TAH and debulking. I saw my oncologist yesterday who said I had done well and she will arrange for a base line scan to be done. Then I will see her again in three weeks time. After that every three months for blood tests for a while. I asked her if I needed to take/ have Avastain and she said no. This is what confusing me and I have seen that lots of ladies have it on it after the same stage 3c and surgery as me, any ideas or advice please.

Big hugs xx

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Tay100 profile image
Tay100
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17 Replies
Katmal-UK profile image
Katmal-UK

Hi Tay I think it differs from Onc to onc and area to area. I would ask her to explain more fully her decision. If you aren't happy then I'd ask for a second opinion. Good Luck. Kathy xx

Lindaura profile image
Lindaura

From what I hear, Avastin has been used mostly on a trial basis. It seems that although some ladies seem to do well on it, the data has not shown it to be that effective and the side effects can be quite distablising. Especially the chance of bowel perforation, which can be deadly.

I am just hoping they start using PARP inhibitors instead.

Best wishes,

Laurs

Lyndy profile image
Lyndy

I was very pleased to have Avastin after chemo in 2016. As far as I know it served me well. However I think they are finding that it doesn’t work/ suit everyone. I would ask her to explain why she doesn’t want to use it and crucially if you don’t have it now..is it an option for you later?

If you are still unsure after her explanation you can ask for a second opinion to check that you are not missing out.

Great that you have done so well though! x

January-2016-UK profile image
January-2016-UK

As far as I understand the NICE guidance is that it is not offered to Stage III if there is no evidence of disease following the operation and the final scan nor if there is any residual disease its location make a risk of bowel perforation likely. This from memory though.

Tay100 profile image
Tay100

Thanks ladies, that really helps xx

Lizz49 profile image
Lizz49

Hi Tay

I asked this question and was told I didn’t need it as NED after surgery although I did have mop up (adjuvant) chemo like you, I was also stage 3. I believe Avastin is given if there is some disease left but it might differ between regions...I think if you have a clear scan and low CA125 they won’t prescribe it.

Good luck with your final chemo and congrats on getting to the end, it’s a great feeling! Best wishes!

Liz Xx 💕

27-359 profile image
27-359

Hi. There are quite strict criteria regarding whether you are offered Avastin or not. There has to be a certain amount of cancer cells present after the op and the spread of these cells has to be of a certain size. My post op scan, taken when I had already started chemo, showed this and I started the Avastin immediately, alongside the Carbo/Taxol. I hope this helps.

Jenny

Tay100 profile image
Tay100 in reply to 27-359

Thank you, that does help explain it xx

sjg81 profile image
sjg81

My mum is at least stage 3c and has had avastin since her 1st chemo (Carbo/Taxol) it has been removed from her 4th and 5th chemo (she has had her 4th) and is now scheduled for the debulking surgery. She was told she was being given Avastin as surgery wasn't an option for her at her first diagnosis, (although they always planned on surgery inbetween 4th and 5th chemo if they were happy enough with her progress).

We live in Newcastle and my mum is having treatment between hospitals in Newcastle and Gateshead.

I don't know if that helps at all.

Sarah x

Eriksendi profile image
Eriksendi

I was staged with 3b PPC and asked the same question and was told if no evidence of residual disease after surgery, then it is not given. Clearly from reading everyone’s posts this is not always the case so definitely worth raising.

Numi profile image
Numi

I was diagnosed 3C in 2016. I had debulking and chemo. I was told by my oncologist that Avastin was not appropriate for me as the surgery had removed all visible signs of tumour, and it was only used in cases where it was known there was some small amount of residual tumour that surgery hadn't been able to remove.

bamboo89 profile image
bamboo89

Well, lots of different explanations/experiences here. I was offered Avastin in conjunction with adjuvant chemo (taxol and carboplatin) because I'm stage 4b, presumably under the 'its nearly too late, let's throw everything and the kitchen sink at it' concept. On looking it up at the time, the rules from NICE are that anyone stage 4 is offered Avastin as well as chemo automatically. Those who are stage 3 are not offered it. I'm guessing there may be other, sub criteria which might enable some women who are not Stage 4 to be given it, or perhaps offered it at a later time, but I don't know what those are - I didn't read that bit.

juliamillen profile image
juliamillen

I had chemo plus hysterectomy and did not have any further treatment until I had a recurrence when I was given letrozole.

Mptelesca profile image
Mptelesca

Hi Tay100. It sounds like you have the same path as I did 3 yrs. ago. I'm in NY but went to Yale for all of my dealings with OC. I had the surgery, Catscan, 3 weeks followup, then chemo for 6 sessions (once every 3 weeks with Carbo/Taxol). then 3 mos follow up visits for bloods and examinations. I had never heard of Avistan and still not sure what it is. I need to look it up. It couldn't hurt for you to ask them. I know drs don't like to be told what to do, but, if they think Avastin assists in the killing of whatever cells may be left behind then they should do it. I tend to always trust drs and never question them.

At the time of my surgery when they said they "got it all", I wasn't sure why I needed the chemo but they had made it clear to me before surgery that chemo was part of the protocol for Stage 3. Okie dokie...didn't have to tell me twice.

I guess I'm just trying to give you my scenario to let you know you are definitely on the right path with or without Avastin (I really need to look it up).

Good luck to you....you will do this! Sending you positive thoughts and energy.

XOX

Marisa

Bobsie profile image
Bobsie

Hi. I'm 3c finished 6 sessions of carbo/taxol after TAH/BSO, bladder resection, and small bowel resection with ileodtomy. Ca125 down from over 1200 to 30 (normal range). Had 2 month break and Ca125 began rising quickly (up to 500 in 2 months). Was started on Doxil and offered Avastin, which now had to be held because of kidney issues. Now nephrostomy was done, but were able to pass a stent, so the bag can be removed. BUT, it will have to be replaced every two months, so I'm worried Avastin is off the table (becsuse of bleeding risk). Praying Doxil alone will do the trick. Ca125 was cut by more than half after first doxil. This is all very scary and we just gotta trust the doctors and God.

Tay100 profile image
Tay100 in reply to Bobsie

I’m so sorry to hear what is happening to you, I send you all my best wishes and positive thoughts xx

caf132 profile image
caf132

Good Morning-

I was told that Avastin is for reoccurance only. Hopefully you may never need it. drugs are not without side effects.

Xx

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