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i am now on 3rd lot of chemo, for advanced bowel cancer, over a 4 year period, if this one doesnt work, basically thats it.
So just doing research just in case, had a nice reponse to my requests for info about trials, hav'nt checked them out yet, but I will.
Now,, my Oncologist is not a fan of Avastin, quoting bad side effects, not really proven etc and I am on Cetuximab an irinotecan. However, if I can find out from anyone on here,who has been onit, what it was like , what the results were etc. If needs must, I will ask for a second opinion.
I know I'm getting ahead of myself, but everyone on this site knows that things move exceedingly slowly
so i just want as much info as I can get.
Good luck to you all. Hopefully Im sednding this to as many tags as I can
I have just had my first chemo for bowel lung mets, including Avastin, had tingling in hands, pain in jaw with first mouthful and tummy ache, so not too bad. Am very tired today but not sure which meds causing it .
Will keep you updated. Take care ,
My husband was diagnosed with Stage4 Colon
cancer with Liver/Peritoneum and Lymph Mets in December 2011 and was given a prognosis of 6 months.
He had two rounds of Folfox – which caused
him to become extremely ill with diarrhea and he experienced extreme weight
His then oncologist – (who was EXTREMELY
ANTI Avastin) then “gave up” on him (This was EXACTLY a year ago today) and asked for him to be referred him to The MacMillan Nurses.
Two days later he was admitted to hospital
due to the extreme diarrhea - and was seen by a different Oncologist who
diagnosed (eventually) E-Coli – This was his own e-coli turning against his
body (we all have e-coli in our gut but the chemo can cause it to go mental) –
sorry that’s the best way I can describe it!
When the e-coli was “sorted” This new
oncologist changed the Chemo regime to Folfiri (Modified DeGramont Schedule) and also tested him for Cetuximab (He wasn't suitable) He had two rounds of Folfiri and then he had a CT Scan – there were no growths to the
We then discussed adding Avastin - We "researched" the possible “side effects” of
Avastin and asked several knowledgeable people their advice and we decided - given the prognosis- it
was worth “playing the odds”
So, the “New” Oncologist – who is VERY PRO
AVASTIN - then added Avastin* to the “mix” my husband has now had 6 “rounds” of Avastin
– on the 10th round of Chemo and 5th round of Avastin he
developed an anal fissure which were treated with Scheriproct suppositories
(not pressaries as I insisted on calling them :)) – He
also had a couple of nosebleeds. Whether these were a side effect of the
Avastin or a build up from Chemo** – no one knows…
The oncologist then decided that he should
have a chemo “break” for three months and ordered a CT Scan – The scan showed
“no growth” – however, it did identify massive Pulmonary Embolisms – so the
chemo “holiday” started immediately (Beg November) while they tried to sort the
N.B. The PE’s started after the 1st
round of chemo – so I don’t think they are Avastin related
He had a further CT Scan at the end of
December and the tumours are still stable (and the PE's are smaller).
He is due to have another CT scan in Feb –
and will continue on the “holiday” if there is still no growth in the tumours –
if there are he will re-commence the Folfiri/Avastin regime.
While he has had a very rough 13 months (he
also developed steroid induced
osteoporosis and had 6 fractured vertebrae – so he also had two lots of
He is now the “healthiest” he has been since diagnosis so we
are keeping everything crossed that this continues :)
So in conclusion….if you have the
opportunity to have Avastin – go for it!
Best of Luck XX
*We have private health insurance and the
Insurance will pay for 12 doses (MAX) of Avastin
**He also had the "usual" chemo side effects - mouth ulcers/dry skin/aversion to coffee and alcohol/fatigue/taste changes etc.. (Oh and his hair has got darker - which is a bit weird - he now looks younger than he did?)
My husband is having second line chemo that includes Avastin. Also Irinotecan and 5Fu. To be honest he has had no side effects at all in his first two cycles, in fact he is better now than has been in last year (shame its not cureable!) Before that he had 5Fu and Oxiliplatin. Oxiliplatin had quite a few unpleasant side effects like loss of feeling in finger tips and toes (permanent) and severe cold sensitivity (stopped when treatment stoppped).
Avastin is not right for everyone because it only works on tumours that grow in a particular way (drawing from a blood supply I think) so for some people would not be helpful.
Not sure if all this is scientifically correct, sorry if it isnt.
If you look on the internet at how Avastin prolongs life, it does or at least can do, if its the right kind of tumour, but for how long is very variable, anything from a few weeks to years are claimed. Basically not enough research has been done and that was mostly as first line treatment so its all a bit uncertain.
Also ( am assuming you live in UK) NICE who decide what the NHS fund are just in the process of saying no to funding for it again. This means it needs to be funded locally, so that depends on how your particular NHS trust view it. Its very expensive, I think about £30,000 per patient (again sorry this isnt exact).
Sorry to give you stark facts but I get the feeling this is what you are asking for so you can see your oncologist informed. There are scientific papers available on the internet but are pretty hard going if your not used to academic stuff :( and thay all give different results!
All I can say is keep positive for now, your results may well be really good with the regime you are on. If not its worth asking to try anything and everything as long as you are well enough to cope with it.
Sending you positive vibes and so hoping your results are good
My fiance (29) has PMP, he started chemo last week with Avastin, Forfiri (however you spell it), 5FU and Irinotecan.
He has been seen by 3 oncologists (two in Italy and one here in London), and all 3 agreed that Avastin was the way to go.
Im not familiar with the side effects, and to be honest I prefer not to.
As PMP is an extremely rare cancer, we dont know whats gonna happen. Hopefully hes gonna make it and we are getting married in August, as we planned last year...
Lots of love dear, Ill keep you posted on how the chemo is going :)
Thank you so much for your reply it must have taken absolutely ages to do. So hope this all works for him. I know its rough going, all this chemo, does take its toll, but hopefully all worth it in the end.
I will let you know how I get on, as I said, this is all knowledge gathering. Hopefully I wont need it just yet. And I will watch with fingers crossed your husbands journey.
Thank you so much for the reply, It seems thats lots of people are actually being prescribed avastin now,
so that may help my case, if it comes to that. I am sorry but I dont know what PMP is, but all cancers are nasty and wish you both the best of luck.
Thank you also for your reply it must have taken you too, ages to do. Find it all very helpful, especially the type of tumour, and the fact your husband is doing so well,,,,
I am on Cetuximab which my Onc says that it should match my gene type very well, This KRAS gene thingy, See, there's no point in my looking at internet results, 4 years ive been at this and still have'nt got the medical brain! So replies from people like yourself in ordinary English are brilliant.
As I said I'm just trying to get myself informed "just in case"..
I will watch your husbands journey along with mine, it seems as though we have both had a similar road so far,
All the good luck in the world
ps. I am in the uk North West, which is very hard to get funding for anyway. Had to get it for Cetuximab.!
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