Update of MRI results for Brain Mets

Hi Hoggy here.

The update is that I have no lung cancer in my chest it's clear. My brain has still 2cm and not 3cm in the brain and a 2 9mm small ones. My oncologist is a chest expert not a brain expert so is referring me to the Cambridge hospital who are the brain experts in that field. I had stupidly reduced my steroids from 4 to 2mg then to half and then 0. But the MRI still shows fluid swelling around the tumour so that was a bad choice I decided, but I fell o.k. So I have been told to carry on 4 mg steroids and I may try the odd one 2mg. The reason being is not the eating, eating and eating but I am not sleeping. I haven't slept for 3 days much even though I take the 4mg both before 9 a.m. but that is probably just me and maybe others sleep well perhaps someone can tell me this? I need some sleep.

So I await a letter to go to Cambridge hospital then what will decide then. That is my update and please tell me your updates.

Thank you

Hoggy

18 Replies

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  • Hi Hoggy

    Great to hear your chest is clear. And hope it long continues. Steroids seem to be keeping my dad awake at night too well that and probably worrying about the brain mets and also he is surendering his driving licence today :(

  • Hi Knic,

    Your dad will probably be upset stopping his driving and must feel annoyed to have that but probably for the best. I don't drive myself my hubby does. As long as he has someone that can transport him to hospitals or whatever that will be good for you.

    I have just purchased at Holland & Barratt a Herbal Valerian hops bottle to aid sleep and anxiety. I will let you know if they help. Being herbal I thought they may make and help me some sleep - I hope so.

    How are things with you?

    Hoggy

  • I seem to feel like I am in a nightmare that doesn't end I think about cancer and dream about cancer. I have scary thoughts and feel sad about the future.

    Do you know your treatment yet? Dad is having wbr 5 sessions, I have pushed for him to get a second opinion about targeted radiation but he just wants to get on with things. How are you feeling?

  • Hi Knic

    I'm feeling a bit more sleep from taking a Valerian herbal tablet even though I have only had one so I will keep on them. They made me less anxiety. I hope to get a letter in a week hopefully as to what treatment I will. I had told I probably wouldn't be able to have an op and possibly not stereotactic (although very confusing the different treatments there are) it may be Radiation and a mixture of other things. But wont be happening until I have seen the expert at Cambridge. Where are you based at?

  • My dad is based in kent. Feeling very deflated today, have mum and dad staying with us we live in hampshire. Dad has been talking about how he doesn't see him seeing the year out and how he doesn't want to die suffering. I so want to give him hope but after reading things I am feeling not so hopeful. Also worrying about how he will cope with wbr. Sorry to be full of gloom just the cancer cloud has well and truly settled and their appears to be no sighting of sunshine.

  • If I were you, Eric, I would have a talk with the doctor about your apprehension and fears-they are trained to address problems experienced by patients, caregivers and relatives. You must remain positive!!!! No one except God knows what the future brings. You are very human and just need some help dealing with the apprehensions. Barbara

  • Hi Knic

    I know Hampshire and Kent. Before we moved to Norfolk we lived in Putney/Kingston but glad we got out of the rat race and for a better slower way of life. Try your dad not to despair. He wouldn't die suffering they wouldn't let that happen wherever or whenever that happens anyway. We too were deflated and full of gloom everyone goes through this I would guess, but also speaking to a different oncologist gave us a glimmer of hope and that is something to cling on to and lifted our spirits. Your dad is not alone. Tell him there are plenty of us in the same boat . I know it's constantly on your mind but try and live what you have at the moment. Forgive If I mentioned this already but I contacted a Spine & Brain org.uk for leaflets about more information. brainandspine.org.uk/ This is excellent for information I came across and check the leaflet on brain tumour leaflet online and in particular PAGE 21. that lifted up my spirits. I'm not getting above myself I'm quite aware of the situation but please let me know when look at it?

    Which hospital is your dads treatment attending to?

    On a different note, I got 2 hours sleep last night so the Horlicks and Valerian are not working yet. I will give it time. Le me know how you get on and try and keep your chin up.

    Hoggy x

  • Oh Hoggy thank you for your reply I will definitely check out that link you posted. Dad sees an oncologist at Medway hospital and is having radiotherapy at Maidstone. It's hard seeing dad try so hard to do things he used to but he gets so tired and breathless sometimes. He still tries tho so not ready to give in. I really appreciate having people to talk to who understand so thank you for taking the time to reply.

    I hope you start sleeping better soon let me know if you find something that works.

    We looked at moving to Norfolk many holidays there and happy memories x

  • Hi Hoggy

    I am in a similar situation. I have been in a similar situation. My chest was clear for 4 month , even had a another reduction in November. But unfortunately my scan last week showed progression again on my chest. Which I am not too concerned about due to I respond very well to chemo. But I have two mets in my brain , front lobe and back lobe and a few tiny ones scatter about. I had radiotherapy in January which was not worth anything really. As I am class 1 which is the best class to be in , health wise. And they only gave me class 3 treatment. Which is for elderly patients as a last resort. I paid private to see a consultant at Christies who confirmed that I should have been given the highest dose. It is too late for that now. Good news Christies is willing to take me on. I am not using my local hospital due to I have no trust or confidence with them now. I reduced my steroids and gave off them, and 5 days later I lost my speech again. Started on 4mg again and got my speech back , now on 2mg daily. At time I can sleep and then odd days up during the night. I am pleased to be on 2mg , due to I had a lot of swelling in my legs, knees and ankles. Which stopped me from walking upstairs , as I couldn't bend them. So I have my mobility back. My MRI scan after radiotherapy (7 weeks ) still shows some swelling and progression on my front lobe. So that shows how crap the radiotherapy was they gave me . Due to radiotherapy is usually an excellent treatment. So basically they have limited more options for me. I had a meeting with the radiotherapy manager who is based at another hospital and he agreed that it should have been the higher dose and if I had been in his clinic , I would have been given that dose. But we can't go back now. He did say that they could go back in at a later date and give me the small dose again , Due to they haven't used up all the treatment.. But I would have a far better option for some SBRT treatment on the high dose. Now I fit the criteria . Waiting for another appointment at Christie's to discuss treatment. I will be traveling a few hours , but I know I will receive better treatment. In the meantime , I okay and hopeful.

    I hope you get the treatment you need and have good results.

    Kaz

  • Hi Kaz

    I'm still learning about all this can you tell me what the classes mean as you are ahead of me. I originally thought it went in to stages but the onc. said it doesn't mean like that so it's classes you can tell me about what it would be useful to me and the best and worse etc. It looks like Christies are on the best route for you. I did think about private as well it's something you think about. I have read about the stereotactic treatment and that sounds a good route. I suppose everyone is different. Do you know the sizes of your tumours?

    Thanks

    hoggy

  • Hi Hoggy

    sorry it has taken a while to reply. I have had quite a few appointments to attend and traveling. Not been too well, severe problems with eating , chest infections , thrush in chest and a small collapsed lung. Well I at Christie's tomorrow again for procedure on my collapsed lung. Then Thursday , assessment on my gullet /oseophegus. Hopefully they will sort this out. As I am struggling to eat without pain. They have said it is all side effects from radiotherapy. Reducing steroids to 1mg at moment , to help out with mobility. As struggle to climb stairs. I am being referred for a trial also, they think it is the best option at present instead of putting me on second line chemotherapy. Not sure what the trial is , waiting for an appointment.

    In reply to the classes , yes we are staged for diagnosis , but we are also classed on KPS. (Karnofsky Performance Status.) This dictates the level of treatment we receive on performance , health and treatment. It is marked from 0-100 and there are 3 classes. For example, I was class 1.

    70 - Cares for self; unable to carry on normal activity or to do active work

    Performance 0 –1 Asymptomatic (Fully active, able to carry on all predisease activities without restriction)

    Controlled primary disease. This would mean that I would be given an aggressive treatment or fit enough for all treatments. Then it moves to class 2 and class 3 , class 3 is minimal treatment due to health conditions . If you look on the cancer research website and type in

    performance (trials). It gives you the information , or just google KPS.

    all the best

    Kaz

  • Hi kaz

    Thank you for all the information very useful. I hope Christies get you sorted out with your gullet etc.

    My latest news is that I am having an op for the larger tumour in a weeks time at Cambridge. This will affect my speech and memory. I too was asked for a trial which initially I said yes but as the op is imminent there is no time to do that. Check if the side effects are ok. My trial mentioned it would give me ulcers and tiredness . It was a cancer tablet that I would take to see if it would enter into the tumour, for a couple of weeks, but having a Hiatius Hernia it may not have been good to have me do anyway and the trial. The trial wouldn't actually give me any benefit for myself as I am having the op anyway so it was purely for their trials. I'm quite apprehension about the op as is my husband, stressed out, but it has to be done. Please give an update in a couple of weeks when you can and I will in a couple of weeks after this operation.

    With best wishes

    Hoggy

  • Hi Kaz

    What dose of radio did you receive and over how long? Also how long between wbr and scan to see if it's done anything?

    Dad starts radiotherapy next week for 5 days was worried he is not receiving a good dose but have since learnt that it is common in Europe to receive treatment over a shorter time but of same dose.

    How are you feeling Kaz? Dads lung tumour is still there and he has collapsed lung, fluid and angina. He gets tired and gets pains and breathless sometimes. The brain mets caused him to feel sick and nauseaus the steroids seem to help and have given him back an appetite.

    Good to hear from you.

  • Hi I had two fractions of 6gy in January. Been on steroids since December, reduced down to 2mg since Febuary. Now reducing to 1mg and then trying without them. The radiotherapy hasn't killed any mets but has made them all stable. I have no symptoms from my mets , so that's why they are concentrating on my lung again. Due to I have had some progression after being stable for 4 month. But they want to get my collapsed lung and infections sorted before I start treatment again. So fingers crossed I can start sooner rather than later.

    How's your dad doing, I they doing anything for his collapsed lung.

    x

    kaz

  • Hi Kaza

    Thank you for your reply. Dad is in day 3 of 5 of radiotherapy he is having 4gy x 5 days. He was here to stay with us last week and it was upsetting to see how much he has changed. He gets breathless and tired so easy, also has horrible coughing fits- he has not had treatment for his collapsed lung or the fluid in his lung- they don't think they can treat it! I wonder if this makes him feel like this? How did you get on with side effects from brain radiation was it Wbr you had?

    X

  • Hi Hoggy/Knic

    my update is I have two more tests. At Christie's they carried out a brachytherapy. This was to give a blast of radiotherapy to my tumour. They thought they could blast the inside of my tumour before starting chemo again. But when they went in the tumour was on the outside , none on the inside tube. Due to having radiotherapy in that area last year , they couldn't do it. Also I had an endoscopy , which I was severe pain and had to be held down. I was sedated but I could feel everything. This was to check why I couldn't eat any solids. I am on two lots of acid tablets and can only eat very gentle foods, sometimes none at all. They couldn't find anything, everything was normal. They took a few biopsies , so I am waiting for the results. I have had four lots of antibiotics for thrush on the chest and four lots of antibiotics for a chest infection . So there is underlining issue hiding. I at Christies on Wednesday, my oncologist has referred me to another one to discuss next treatment. Possibly starting a trial . I just want to start treatment again , I asked about decreasing my steroids. And they agreed I can reduce myself. I just have to keep an eye on any symptoms starting up. I am a bit scared of reduction , but I know I can take an extra one if I can feel anything starting up. I have reduced to 1mg a day , and been okay for a week. I want to get my mobility back. I can walk fine on a flat surface but struggle using the stairs.

    I will keep you all posted.

    best wishes to everyone

    x

  • Hi Kaza/Knic

    You have a lot going on with you Kaza I do feel for you. How big was your tumour?

    My trial will not be happening as my op is Monday and they haven't got time to wait a few weeks down the line, which is OK for me as I'm not sure if I said, but it doesn't benefit for me anyway. I had Bronchitis and antibiotics and a sinus problem and a loose tooth which I have now sorted yesterday. Everything's always happen just before another thing is about to happen. We spent from 11 a.m. to Addenbrookes to 7.45 p.m. we stayed overnight on hospital accommodation as we wouldn't have got there as early for all the test otherwise. I think I said I reduced my Dex from one to cutting them in half. Mainly to be able to get some sleep which is helping me. Eat, eat, eat. I can't stop!!! Trouble is my hubby is keeping up with me so we are now getting fatter than fat. I never knew I could like as food as I can. I use to eat when I was hungry but now I'm planning what I'm thinking the next days meal before I have even finished today. Are you the same?

    I hope you get your mobility will return I'm sure it will. The good advice I was told was to listen to your body as everyone is different. It works for me so far.

    If you mention to reply the couple of questions in this back that will be great otherwise I will be in touch in a week or so when I have had my op.

    Best wishes to you both

    Hoggy x

  • Hi Knic

    My trial will not be happening as my op is Monday and they haven't got time to wait a few weeks down the line, which is OK for me as I'm not sure if I said, but it doesn't benefit for me anyway. I had Bronchitis and antibiotics and a sinus problem and a loose tooth which I have now sorted yesterday. Everything's always happen just before another thing is about to happen. We spent from 11 a.m. to Addenbrookes to 7.45 p.m. we stayed overnight on hospital accommodation as we wouldn't have got there as early for all the test otherwise. I think I said I reduced my Dex from one to cutting them in half. Mainly to be able to get some sleep which is helping me. Eat, eat, eat. I can't stop!!! Trouble is my hubby is keeping up with me so we are now getting fatter than fat. I never knew I could like as food as I can. I use to eat when I was hungry but now I'm planning what I'm thinking the next days meal before I have even finished today. The good advice I was told was to listen to your body as everyone is different. It works for me so far.

    I will be in touch in a week or so when I have had my op.

    Best wishes to you

    Hoggy x

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