Over the past 8 months my cancer marker has been slowing increasing and despite a change in chemotherapy adding Carboplatin to my Avastin, it is still rising.
Over the past couple of months I have noticed niggling tummy pains, but it has always been put down to wind with the constipation caused by the Carboplatin. But this last month I have been struck down on 4 occasions with horrendous stomach pains and vomiting. Despite my GP prescribing various meds, nothing helped. My Oncologist is now thinking there is some fluid in the bowel.
What I find strange is he says it isn't acetates but fluid, now what is the difference, does anyone know ?
I am starting on a new regime of Cisplatin/Gemcitabine, then on day 8 Gemcitabine, a week off then the whole regime starting all over again on day 21. I am going tomorrow morning to start the first session. He wouldn't start today as I have to drive myself to chemo as my hubby is partially sighted and he was worried about the side effects with me having to driving back.
Has anyone had this treatment please, I would be interested to hear of any side effects.
I was also interested to read when doing an on line check that Cisplatin is the oldest of the platinum based chemos.
Anna xx
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spanishanna
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Firstly let me start by saying "b#gger"! I know it has done great things for you in the past and to lose it as a weapon is disappointing.
As you may have seen me whinning on another question, my first line shows me I am going to need second line soon and ovacome have suggested one of the drugs for consideration is Gemcitabine (I am platinum resistant I think).
So, I have no experience of this but the macmillan site does go into detail about this regime and side effects.
Thanks for the link Lizzie, this is one link I have in my computer, but it is nice to know personal experiences.
I have had Gemcitabine before. Mine was my 2nd line of chemo way back in 2007, I had it with Placitaxol.
How does my Onc arrive at his decisions, I have no idea to be truthful. He is head of Oncology in Malaga and a research Scientist at the University in Malaga,he is also the President of the Spanish Oncology Society. He is well known to The Royal Marsden and sends some of his students there, He is also a well renowned man in the World of Oncology, I am told they bow in reverence in the States to him. It is a shire fluke I got him and I am so lucky. I can only assume experience in his field is telling him which direction to go in.
I too was told I was Platinum resistant that is why Avastin worked so well for me, so I am astounded that I am back on my 2nd Platinum drug. Only time will tell if it works this time.
The reason I ask is that they are doing some research in Portsmouth to allow them to tell which drugs YOUR cancer will respond to without trial and error. Unfortunately, they are waiting for funding for ovarian cancer, but if they get it they think the test will be available in a few years for us too.
Sorry to hear about the Avastin and the horrible pain you have been in. Sorry doesn't really cover it but I get the impression you are tough enough to move on.
Just have a quick look at the website for Exelixis Inc - the makers of Cabozantinib (XL 184) which is the trial drug I am on. It is for women like us..carbo resisitant etc. If your oncologist is well regarded in the US there is a chance you could get on the trial too. I could do with some company. Even if that isn't possible it IS a positive development that will hopefully be available to many more soon.
Keep your chin up - you brave lady. I've got it into my head that your originally from LIverpool?!
Thanks for your replies Sarah and Lizzie, I have been zonked these past few days that's why I haven't replied. Sarah I am curious to know where you are having your trials.
Unfortunately not all drugs are available here for trial. My oncologist has using Avastin, paid for by the hospita, for well in excess of 6 years, but he isn't using Avastin with Ombrabulin with is being trialled at the RM.
Lizzie I have heard of the research in Portsmouth. When did I become platinum resistant , I was never told I was until I started the Avastin, although my first and second line chemos were both platinum drugs and I have had repeat of the Carboplatin.
Bruised and batter today after a crap onc. nurse yesterday and had a scan this morning. Results for that on Monday evening so fingers crossed.
I got a reply from the Professor at Portsmouth, but he says he has no test available at present. They are looking for more funding though, and if he gets it he believes in a few years they may have something for ovarian cancer. Possibly too late for me, but it is hope for the future.
Poor you. Its bad enough without the needles. I have an MRI on Monday at 10:45 then a CT at 2;30 - so a whole day with a line in. Not looking forward to that - you really do feel like a patient with one of those in.
I found the last couple of chemos very upsetting and also having my bloods taken. As you say, with arms akimbo as they try and find a vein, me looking like a shadow of my former self and everybody trying to cheer me up, it can be hard. BUT then I come home, and it was worh it
Sometimes we have to laugh, if we didn't we would end up crying. I think this is where my Spanish oncologist doesn't really quite understand my English sense of humour lol
Sarah, my friend is also on the Avastin/Ombraulin trials at the RM, I know she used to go on a Monday and is under Prof Kaye..Good luck with your MRI and scan on Monday
Had another bad night last night, bad stomach pains, but they were better than the previous occasions, intermittent and no vomiting, so could it really be too soon for the new regime to be working ? I hope it isn't.
One thing my GP explained to me yesterday when he was putting the contrast in for the scan is ascites ( do I ever spell this right) is a yellowy fluid found within the abdominal cavity, whereas mine is fluid within the bowel, a totally different fluid. This is what I asked in my first post, as I really didn't know there was a difference.
Anna - I really hope you get a good night tonight and that improvement continues. Yes I am a Mon person under Kaye at the RM although I normally see a woman consultant - a clever Kiwi who I have a lot of trust in. We are going to have to go down the night before as we live at least 3 hours away which is a bit of a pain.
Lizzie - how did your office visit go?. In my experience some people look scared and awkward and you have to work hard at putting them at ease - even though its you who has actually been ill. IF IF IF you have to have more chemo look into having some relaxation techniques taught to you..I ended up having to sedate myself to get through it. My bravery just seemed to run out after 3yrs of treatment!! I am popping pills on the trial so that is easy.
Visit to office went well in the main. Eveyrbody was friendly I was pretty relaxed. I had a couple of wobbles. In a private meeting with HR, My team lead and the private health insurance I went into detail about the way I see the immediate future and it upset me. I pulled myself together before I went back to the main office though. Then when I left I went down to reception and when the recptionist hugged me it started me off, worsened by one of the young guys who has emailed me every week meeting me at the car and giving me a bottle of red...
So I went a quick march around the nature trail to pull myself together before driving home.
I will be off for the rest of December on full pay, then provided I am still well will do 3 x 0.5 day each week in January (on 66% pay through private health insureance) and then review it when I see my oncologist on 20/1/2011.
I am getting some relaxtion coaching starting (2nd sesison on Tuesday) through my local hospice who do home visits. I will give you some detail when I have had the second one. I hope the sedation was to get you through chemo and not the relaxtion tecqniques
Do any of you ladies having chemo that have it through a vein use Emla cream ? It is brilliant and was mentioned to me by our best friend who is a retired GP. You just put on the vein or veins you think they will use and cover with the sticky cling film type dressing 1 to 2 hours prior to the needle going in. No pain at all. I am the only one in Malaga that uses it, they just don't tell their patients - doesn't stop the bruising though, I use Arnica cream for that and that helps disperse the bruises quicker. Today I look as though I have been in a fight with the state of my arms.
You have a heck of a journey Sarah, I thought mine was bad enough - 1 and 1/2 hrs drive each way and me having to do the driving. But lets face it I would travel much further if necessary to get the right treatment.
One thing I have had for a number of years now is Reiki. Probably mentioned before that my hubby has been told he has healing hands and has taken the primary training in Reiki. It really does relax and my lady who used to give me Reiki maintains it is really keeping me going. She actually trained him as she is a Reiki Master, Now I have my own Reiki man on tap, I just have to shout and he comes running. Actually it is good for him as he finds it very relaxing.
Lizzie, The first time I had Reiki was at a health farm and I thought what was all this about, I felt nothing. Then when my cancer started a friend of mine suggested I went to her friend who is a Reiki Master. I was very sceptical for a number of weeks and Sybille, my Reiki lady knew that. She did say you have to start relaxing into it and believing in it. It took a while but eventually I was relaxing so much the colours in front of my eyes were amazing and I would get off the table so relaxed and feeling as though I was floating in the air.
Piet (my hubby) was then given the basic training and he too is like Sybille was, picking my hot spots up. He feels the heat coming out of the back of my head when I am tired, the heat radiating out of my stomach and in the groin area. I also feel areas where Sybille's and his hands are hotter on me, which means I am drawing energy from them.
It has been explained to me that some Reiki people do not have the hot hands, now I wouldn't like that as I am used to feeling the heat and I know it is really benefiting me. I have had a session from Piet this afternoon - 1 and 1/4 hours - so relaxing for both of us. If the person giving Reiki is good, they almost fall asleep too during treatment.
Reflexology is also good particularly if you get someone that can really get you into a relaxed mod. Some do just Reflexology but some do relaxation with it too.
I went to a strange luncheon here at the beginning of the year. A woman called Emily Hilton has written a book and claimed she has cured herself from breast cancer through alternative healing and plants from the Amazon jungle. I had 3 healing sessions with her - unbelievable. I have never felt so relaxed, poor Piet was getting so annoyed as he couldn't get me into my usual argumentative self lol
Keep trying with the Reiki Lizzie, you won't get there in one session, persevere.
I have also had a couple of strange encounters in the past few weeks. One with a lady I have been emailing and talking her through treatment for breast cancer. We were at the same function and she came over to me and asked if I was Anna, I said how did you know, her reply was vibes told her it was me. Last Sunday a lady I was talking to said a similar thing, she wants to get to know me she thinks she can help me. When I was talking to Sybille my old Reiki lady about these two incidences, she said people who have had a lot of Reiki radiate something that's picked up by others in the 'know'. Strange I know, there is no wonder my son thinks I am turning hippy lol
Forgot to mention Lizzie, some people giving Reki do not do the hands on, but have the hands above the body, I don't like that, I prefer the hands on approach, much more relaxing and effective.
Roger (my reflexologist/reiki man), sort of lightly touches you. But I think it is mainly his hands brushing you because they are so close. I have to say though, I thought the whole experience of having someone so close, silent and yet sympathetic to your cause was very theraputic, phsycologically if not physically. I will persevere. I have another appointment in January with my oncologist and so will have a session with Roger just before. Perhaps you could get your Son to become an oncologist and then you could have full care within the family I might want to have a family transplant though and become part of your family!
Oh Lizzie that post made me laugh. Strange thing is my daughter has a very responsible position within the pharmaceutical industry. I go to her for info that I can't readily get from the internet as she has inside information !!
I get serious hands on Reiki, which is easier when it is your husband, I must admit I might feel rather uncomfortable in the more 'intimate' areas with a strange man. I was absolutely fine with Sybille.
It really is more beneficial if you can have it once a week, is there anyone near you who you could go to ? I know some people who give Reiki charge very little, I would beware of others that fleece you. Sybille charged me nothing, she knew from a young woman she had a gift and is a Reiki Master (the highest qualification) and also taught it until a few years ago. She is a remarkable lady and I am so pleased to know her and have definitely benefited from her wealth of experience.
I could go every week, but Roger works out of the hospice and the hospital suite where they adminster chemo. I am afraid I can't face going to either of those places unless I really have to....If second line treatment is at Kidderminster hospital again, I might pluck up the strength to go each week.
Is there no one else in your town Lizzie where you could get Reiki ? I can assure you it has made a huge difference to my relaxation and I believe gives me an extra something to get me through the never ending chemo.
I will take a look, but since it is free at the hospital it is hard to look a gift horse in the mouth
One thing I wanted to ask is whether your oncologist has entertained etoposide at all (as a chemo, not a dinner guest!)
It is one of the ones ovacome mentioned to me when I looked for hope now I am classed as platinum resistant. There is a second one I will also let you know over the next day or so, but it is on my main PC and I am on my laptop at the moment.
Lizzie, I know exactly what you mean. If I'd had to pay every week for my Reiki I might not have been to keen to go weekly.
Etoposide is one I haven't heard about, but let's face it, there is so much out there at the mo and it is hard keeping up with things.
I asked my GP tonight why when I was classed as platinum resistant am I suddenly put on 2 platinum based drugs - doh what a prat I am, her comment was the chemo is working on new cancer cells, should have realised shouldn't I !!
Just been re reading through your posts and so pleased that you have got things sorted out with work and can now relax for a period of time and to know the money will still be coming in is reassuring.
Sara, Prof Kaye is the guy who gave me months to live, he works very closely with my Oncologist and he had a feeling I could get Avastin here. You are under the best there .
We can celebrate Xmas - yippee. I went with some trepidation for my results tonight to be told there is no fluid or blockage within the bowels. Despite my cancer marker rising there is minute shrinkage in one of the tumours and my Dr thinks I have definitely been suffering sensitivity to the last chemo regime. She is however suggesting I talk with The Prof about a possible Gastroscopy, as 2 out of the 3 bad sessions when I was sick, it was very dark. Chemo can cause bleeding to the stomach and with all the chemo I have had, she would like it checked. Unfortunately here in Spain Drs and hospitals do not work hand in hand together to I have to be careful how I approach The Prof with this question.
A suggestion is to take an extra stomach protector a day, wait until after Xmas and if he agrees go ahead with one. Why the CA 125 is still rising is a mystery. Although she has one patient with a CA125 of 3,000 and no cancer at all - strange isn't it.
I am so lucky to have her support, she has worked in Oncology so has more info for me than maybe another GP who hasn't experienced that side of medicine. She is the only support I have outside of hospital, no support team, no Macmillan nurses and certainly no relaxation and Reiki prior to my chemo. Our chemo unit can only be described as organised chaos.
Great news about your new regime and your bowels (where else could you get away with saying that!?!). Also what you say about new cells makes perfect sense. So once you have had a rest (several years in your case) from it, then there are enough new cancer cells which are not platinum resistant which CAN be zapped by platinum.
I hope I make it that far down the line to revisit my old friend Mr Platinum
Anyway take care, and it is really interesting to hear the pros and cons in Spanish treatment compared to the UK.
Yes, work is now officially the least of my worries.
Lizzie I am sure you will make it as far as I have - mind over matter you know - 50% positivity and 50% treatment that is my motto.
Yes whilst I do so long to have the TLC you have in the UK, there are no restrictions here on any medications for any disease (as long as the recession doesn't put paid to this) . My Oncologist always says the Brits prefer to spend more on their military than on their people !! Give me the medication any day.
Also when people work here they pay more into the healthcare system than we did in the UK, so at the end of the day when you need help there is more money in the coffers.
Ah another horrible day of chemo tomorrow, just Gemcitibane this time but such a long day for me again. But I am sure The Prof will be pleased with my scan results.
That is another strange thing here, I get my scan results through my GP before my Onc. sees them !!
Out with the relaxation music and reiki tomorrow then! You know some days, like today it does not seem real I have the big C. I feel physically great and happy and relaxed.....Does denial count as positivity?
Lizzie I feel the same some days too, I don't have cancer., My friends say I have been misdiagnosed as I look so well, they don't see me on a bad day !!
Have to have a think on the denial and the positivity bit .
Hope tomorrow goes smoothly for you Anna. I am off tomorrow to see my Mumzie and put on a brave face for her. Tonight I am alone as my hubby is away in London but he will be back tomorrow night, so I am looking forward to that. By this evening all my aches and pains are back...but I learnt a relaxation tecnique today with the lady from the hospice so I am off to bed to try that.
Lizzie didn't get my chemo yesterday. Just one week into the treatment and the blood count was too low. I am not unhappy, at least I shall have a break. I am an old hand at chemo now to know just missing one doesn't hurt too much. It is just the 3 hour round trip and the hanging around, all for nothing !!
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