My Mum was diagnosed with secondaries to the liver & lungs two years ago & suspected spread to the bones.
About 3 weeks ago, she started Xeloda but at about the same time as starting it, she became suddenly ill & couldn’t walk any more & became confused with memory loss. She was admitted to a hospice for observation. Since then, she has improved in her cognitive abilities (although she still can’t walk) but a CT scan was done & the result shows a “lesion”.
I spoke to the doctor this morning who says they are stopping Xeloda as Mum is “too poorly” for chemo at the moment & it is not the right sort to cross the blood brain barrier anyway.
I asked what poorly means & she said it’s in terms of mum’s lack of mobility and reliance upon others for toilet & being lifted etc.
She says the decision on what happens next is due to the oncologist, who she will be seeing next week. We are terrified because he is rather an unpleasant, brutal kind of person & we are worried that he will not allow Mum to receive any treatment at all.
The doctor said that they are “stuck between a rock and a hard place” as Mum has improved but not as much as they hoped, yet not enough to be able to take chemo.
Hi Psyche, i can understand why you are frightened, one of the worst dilemmas i think is not having enough confidence in your medics , or in your case, your mums medics. One thing is for sure, you do need to know the treatment plan that they have in mind for your mother. I do hope she will see the oncologist early next week. I suppose you do need to know whether it is the cancer that is responsible for her current state of health or the chemo. It certainly sounds like the chemo from what you say, although i know that sometimes brain mets can someimes have symptoms which include limps and difficulty walking etc.
If you are not happy with the oncologists plan, then you have every right to ask for a second opinion. It may be that the oncologist doesn’t have any ‘people’ skills but may be very good at his job. Has your mother got a secondary breast care nurse? If she has this would be a good person to talk to.
I wish you well, and i do hope your mum gets the treatment she needs
Thanks for your post. Have been away from home so that I could visit Mum several days in a row.
The doctors at the hospice are now saying that they have stopped giving her Xeloda because they think she is too “poorly” to have chemo. Well, she hasn’t been on her feet for 3 weeks (and the hospice has offered little in the way of help to get her mobile again because their physio went on holiday). The reason she stopped being mobile was because of severe pain in the knee, which was suspected BC hotspot but apart from IV bonefos, nothing has been done about it, not even a scan.
They said that Xeloda is the wrong chemo for brain tumours anyway as it does not pass the blood brain barrier & they want to leave it all for the dreaded oncologist to have his say.
As I’ve said in other posts, he is eminent but brutal. What if he refuses to give any kind of treatment??? What options do we have? Does he have the last word on it?
The doctors had a meeting with Mum and Dad today. They phoned the oncologist to see whether he thought Mum should be brought to see him tomorrow. They all concurred that it would be pointless. They say that she isn’t strong enough for either radiotherapy or chemotherapy and that the severe side-effects of both could make her very very ill or even kill her!
I can’t believe there is nothing further they can do or are prepared to do! I am arranging a meeting so that my family and myself can speak to the doctors directly. My sister knows somebody who had a brain tumour who was given some medication (not chemo) to shrink the tumours. Don’t know what it is but why can’t Mum have it?
Sorry to hear the latest news.Its very hard at this stage.I lost my Mum to lung cancer so can totally understand your frustration.But I think you need to have a little faith in the medical team.I am sure they will do there best but do not want your Mum to suffer treatments unnecessarily.
The patient with the brain tumour may have been given steroids which reduce the swelling in the brain but not the tumour and can give a quite dramatic improvement but its only temporary.
Keep asking questions of the Drs and I hope they can find some help for your Mum.
Love n hugs
Dot
xxx
Hi psyche, the most important thing is to keep asking questions until you are sure you understand, and are totally satisfied. My brother has HIV/AIDS, and when he seemed to be dying about 10 years ago now, they thought it was too late for him to have combination therapy which was new at the time. I found out all i could and called a meeting with the Dr’s in much the same way as you have. They reversed their decision and as a consequence he is still alive today.
I found i needed to do some homework tho and find out as much as i could through charitable orgaqnisatons about the options. If you have all your mums info, this is a possibility for you too.
It’s really hard, and i also am sure the medics are not deliberately withholding, but sometimes they do need to know that you know what you are talking about, and also it give you all a chance to examine all the options in a way that is satisfactory to all parties.
If steriods can make your mum well enough for chemo - perhaps that could be a possibility - i don’t know, it is out of my realm of understanding. However with the internet and phone calls you may be able to get some clarity.
sorry to hear about your mum, just sending you a big hug
I remember last year, we thought my mum had cancer and I was totally devastated, thankfully it wasnt, I seem to have coped better with me having the cancer!!!
I’m sorry to hear about your Mum and I totally sympathise with you as my Mum also has secondaries in her brain, as well as lungs and bones. She was diagnosed this time last year and has been on a real roller coaster ever since. She initially was put on steroids to help with her confusion, memory and balance problems and was immediately given a 6 day course of whole brain radiotherapy which was followed by chemo. I think radiotherapy breaks down the protective membrane in the brain and allows the chemo to get through (which it usually doesn’t) The improvement was remarkable and by June this year she had 70% reduction in her lung and only scar tissue left in her brain. She was almost back to normal. Unfortunately it didn’t last though and over the last month or so she has suddenly gone down hill (memory loss, depression, no balance, can’t feed herself properly etc). We have just discovered the lesions have returned in her brain and she has over 20 tumors!! It seems the chemo tablets she is taking (Capecitabine) isn’t getting through to her brain. We have been told the only option left for her is something called Gamma Knife surgery which is a form of radiotherapy which targets the individual tumors with gamma rays and has very little side effects as it doesn’t damage healthy tissue. It’s a very specialist treatment and I think you can only have it in London. We are waiting to hear from the consultants whether she will be able to have it or not. Maybe this could be something you could ask your Oncologist if it would be available to your Mum? My Mum also has Avastin which stops blood flow to the tumors so they can’t get any worse.
As others have said, just keep asking questions and don’t be afraid to ask too many or the wrong ones. I’ve started going to my Mum’s oncology appointments with my Mum and Dad as I didn’t feel I was hearing everything or getting to ask the questions I wanted to. It’s natural to feel like people aren’t doing enough for your Mum because you just want her better, it’s very frustrating but I think we just have to put our faith in the experts.
We have received the worst news possible. The doctors at the hospice, in consultation with the oncologist, have said that they will not give Mum any radio or chemo therapies because she is not fit enough in their opinion to have it. They say the potential side-effects would be too much for her and might even kill her.
So that’s it then. She is coming home to us this week but that’s the end of hope now.
Thanks to everybody who has given me such encouragement & information when I needed it.
All the best for your own treatments and recovery.
Psyche,
Oh psyche I am so sorry there is nothing they can do.I hope you are getting support in taking your Mum home.I hope and pray you get some quality time together.
Big Hugs
((((((((((((((()))))))))))))))))))
Look after yourself,we are still here for you
Dot
xxx
Oh Psyche,
I’m so sorry to hear this news. I do hope you can get your Mum home and make her comfortable. Thinking of you -look after yourself
cheers
caroline
Dear Psyche
so very sorry to hear about you mum - i hope that she gets the support she needs to make her comfortable and your local hospice may have a support group for you - and the women here will also support you - much love Jayne
Thanks for your kind wishes. I’m afraid the doctors said a second opinion wouldn’t be of much use, as the spread has been so rapid and Mum isn’t mobile enough to be able to travel anywhere with ease.
She is being brought back to their home tomorrow, which is what we all wanted and various bodies, such as the District Nurse, hospice etc have arranged for care 3-4 times a day.
It’s such an unreal situation. Back in August, Mum was mobile, albeit walking with a stick, lucid and independent. Now she is bedbound, unable to walk at all, has a catheter & is only able to feed herself & drink with a great effort.
Having had cancer for, we suspect up to 18 years, the disease has finally decided that it is going to “win” this battle.
I feel so bitter when I keep hearing about all the money being spent on things like sending people to the moon, when there are devastating illnesses right here that could maybe be cured, if masses more cash was put into research.
Dear Psyche, I am so sorry to hear about whats happening with your mum. Are you able to free yourself up to spend time with her and your dad? I do hope you are able to take good care of yourself and get all the support you need, to help support your parents.
I hope you’ll keep talking to us, and getting whatever help and support we can give you
love, monica xx
Hi, just an update. Mum has been at home for two weeks now. She is becoming weaker every day but she is happy to be in her own home, even though the care she received in the hospice was really good.
Although I never rated the NHS before, I have to say that the care & attention she is receiving from the GP & District Nurses is first class. She has carers coming in the morning & evening & the District Nurses come in the afternoon to do their monitoring & really getting her shipshape.
My Dad (and us when we are there)is still the principal carer, which is fine, although the toilet stuff was daunting at first (bedpan for number 2s) - we’ve got over it now & just get on with the job in hand.
A Marie Curie nurse comes some nights of the week to care for Mum overnight while Dad gets a good night’s sleep in another room.
All in all, although it’s stressful & hard work, we are glad to have Mum home, even though the circumstances couldn’t be worse but at least we are being well supported by the medical people.
If there is any note of bitterness, it is that she could have done with this level of care from the GPs and oncologist before her condition deteriorated so much.