Sorry to hear that lottie - it does sound quite difficult, it really is all in the experience of the doctor, I hope that you get an expert in the field to do this and anyone practicing can just watch.
As for financial advisors - arggggh- all the form filling and paperwork, I hope they are helpful to you. Unless you have very complicated circumstances they should keep it simple and definitely should not sell you anything.
Just picked up on this thread....
One of my friends, PD is also being treated for Meningeal mets,
however her treatment was slightly different.
PD has had whole brain rads 7 I think everyother day.
There was talk of chemo through a shunt in the scalp but her medical team have put that as next line of treatment.
I know we are different and the people who treat us but I thought you might like to know.
No lumberpuntures for her!
Wishing you all the best,
sorry to hear your news and thet treatment sounds awful. Saying that, my hospital is a regional cenntre for lymphoma and all those patients have their chemo in their spine and it is done very quickly as they are such experienced doctors. Try to ensure that the person doing it is an expert in that field if you can.
Looking forwardto meeting you in Bristol
Oh Lottie, that treatment sounds horrible - let's hope it's not as bad as it sounds. I'm really looking forward to meeting you at the Bristol meet - will you have had any of this treatment by then?
Just wanted to send you a big cyber hug. The lumbar puncture chemo sounds really grim so no surprise that you are feeling miserable. Can only hope that (a) it works and (b) it isn't as bad when you actually do it as it sounds.
Enjoy the Bristol meet.
Thinking of you Lottie..I'm too far away from Bristol but meet ups with others have always lifted my spirits. Take Care..xx
Not surprised you're feeling a lot miserable..you're having a s**t hard time. The chemo for the meningeal mets sounds horrible, horrible. If I were you (and I'm not I'm me) I would question in detail what amount of extra survival time undergoing that treatment might give.
Sounds like you're doing all the 'right' things to help you.
love and best wishes
Earlier this week, I learnt from my latest CT scan that Xeloda has stopped working so well and my various mets (bone, liver, lungs, meningeal layer) have progressed. I have been doing well on Xeloda for about 14 months with one break - and during the break symptoms (nausea) broke out so I went back onto Xeloda pdq.
Discussing with onc the recommendation is to attack the meningeal layer mets with a course of 6 intra-thracal chemos (i.e. administered through lumbar puncture). This I am not looking forward to - apart from the method of administering it I will have the loss of hair etc etc.
I am keeping on taking the Xeloda for now, the thinking being it might be slowing down other mets growth.... not sure of the logic or science of that but it seemed a good idea at the time.
Feeling a bit miserable (no, a lot miserable) how much can one put up with?? But by chance timing I was at a 'Living with secondaries' BCC day in Cardiff yesterday so that distracted me and gave me some courage to face this. There were v. good sessions from Terry Priestley (an onc) and Ludwig Esser a psychotherapist who gave a session on relaxation. Thanks BCC!
I have also contacted the Penny Brohn centre to try and get a one to one session to disuss how better to communicate this stuff with my children, actually talking about death as opposed to stopping short of that word.
And to cap it all I have to sign off now as I have a session with my financial advisor, how I hate addressing all that financial stuff. Oh well, financial crisis what the hell??
ps looking forward to Bristol meet-up later this month
oh that is really good news!!
I am pleased for you too Lottie.
Really pleased for you, Lottie.
Great news Lottie...onwards and forwards
I got good news to-day from my oncologist. The spinal fluid test I had a couple of weeks ago showed no signs of cancer. This means despite signs from a brain MRI of thickening of the meningeal layer, the decision is not to go ahead with intrathecal chemo. We are going to hope that I respond well to Xeloda which I re-started one cycle ago. Since I re-started my nausea has been slightly better and my bone pains have also improved. So here's hoping......
I am sorry to hear about your troubles. Your appointment sounds awful. Well done for speaking up. As the others have said, you really mustn't have any qualms about asking for a more senior person - you can't be expected to be a guinea pig week after week!
Hope things start to improve really soon
Sorry to hear about your difficulties. I had an epidural for an elective caesarian with my daughter and it was the junior supervised by the senior who did it, it took ages and was all left a bit , right a bit, quite scary. I would certainly put my foot down and insist on the experienced person if it is going to be regular. I am having the same issue with chemo. I am treated at a small private hospital and one of the 2 chemo nurses has left, I was very close to both and althuogh I am told that someone else is being trained, I have no intention of letting them practise on me! I know people have to train but when as I will be having weekly Taxol I need someone I trust in charge. Hope all goes wel for you
My son needed lumbar punctures and I can tell you that the pain or "discomfort" is directly correlated to the inexperience of the operator. Those who know what they are doing will be able to go for the right place quickly so if pain is kept to a minimum. You were very unlucky having someone take 45 minutes. Even with a writhing, screaming toddler it only took a few minutes when the experienced doctor did it.
Just so sorry to hear you had such a dreadful time with the lumbar punncture.
I dread each new 'unpleasant procedure' I have or may have to have.
I haven't got any practical suggestions but think you should talk to the senior consultant and make a big fuss about wanting these procedures done wth minimal pain. Why the f*** should we put up with horrible procedures...there must surely be a way these days of minimsing that euphemetic condition of 'discomfort'.
love and best wishes
Really sorry to hear this lottie. No experience or advice to offer I'm afraid - just best wishes
i don't have any exeperience with lumbar punctures , but I can say when I had an epidural with my only son it was very very very quick and there was no trouble at all. I think you are so right not to let anyone just have a go on you - you asked for the person with more experience, but actually she may have only done one or two and she was supervising someone with no experience at all, I hope that the xeloda is effective for you and you get some good answers,
I'm sorry to hear your news Lottie. Are you her2+? If you were I was wondering if you'd been offered Tykerb (Lapatinib) as I think it crosses the blood, brain barrier.
Good Luck with your treatment..Belinda...xx
Well, the latest in my roller coaster ride, I am being tested for meningeal mets. I had a brain and spinal column MRI about 10 days ago that showed some 'thickening' to the meningeal layer. I still have not got the detailed results of that scan, but after discussion with my onc decided best next step was to get a sample of the spinal fluid and test that for cancer cells. A treatment option if mets confirmed is intrathecal (i.e. delivered as lumbar puncture) methotrexate once a week.
I had the lumbar puncture to test the spinal fluid yesterday which was grim, I think down to the inexperience of the doc. Having waited for 5 hours on the 'day ward', two young docs arrived, with the more senior intending to supervise the younger one. Fortunately I was assertive enough to say I was not happy with that and wanted the one with more experience to carry out the procedure. After about 45 minutes and attempts in two places she still had not managed to get the needle through to the right position. At that point I said I wanted to stop, so she suggested finding a more senior doc. He came along and managed to get the sample in about 10 minutes. I have a sore back to-day but fortunately no other side effects.
My worry is that if that is how difficult a lumbar puncture is I am not sure a weekly one is bearable. I can't understand how epidurals are set up during labour if it is that difficult? I didn't have epidurals when I had my kids. The doc who managed to do the lumbar puncture tried to reassure me, apparently it would be the same person giving the chemo each week and they 'get to know your back'. mmmh.
Anyway in the meantime since yesterday I am back on Xeloda. Xeloda has been effective for my liver mets, and it is only since I came off Xeloda earlier this year that there have been suspicions about brain mets - symptoms have been nausea and numb chin syndrome. Although Xeloda is not meant to cross the 'brain barrier' if the meningeal layer is compromised it can get through and do some good.
Ah well, I'd be interested if anyone else has experience of lumbar punctures,
All the best!