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Newly Diagnosed with Brain Mets

10 REPLIES 10
Mildred1602
Member

Re: Newly Diagnosed with Brain Mets

A quick update.
I've had my 5 WBR sessions & all has gone well with hardly any SEs. I have a few more days before radiation peaks but my hair (which is thick) has just shed a little more.
I feel a bit funny today but I believe that's because we're now reducing my dexamethasone dose. I'm now on half dose of 8mg per day & then every 4 days I stop a tablet until I'm down to 1 tablet a day.
Saw the oncologist after last session & I'm booked in for 18 x weekly doses of Taxol staring in 4 weeks. From what I've read so far this is quite do-able chemo? Obviously the objective is to nuke the cancer that is in my bones & bone marrow.
Ingrid
Lemongrove
Member

Re: Newly Diagnosed with Brain Mets

Ingrid it's no wonder you feel anxious about the future. I've had almost a year to accept the diagnosis, and still feel very scared at times. It's bad enough having brain mets, without the added worry of meningeal mets.

For me it helps to know exactly where in the meninges it is, as that gives a clue to how serious things are and what the treatment options are.

 

No doubt you're worried about the WBRT treatment, but in some ways the fact they are giving you this bodes well for your future prospects, because if they are carrying out WBRT it sounds like they're satisfied there are no cancer cells in the spinal fluid, because if they did, they would hang fire on WBRT until you needed it for pain control. Even so I know the thought of the treatment must be scary and horrible - and from what I've been told by friends that have had it,  it's not a nice treatment (apparently the SE's kick in when they take you off steroids). But, the people who have had it, have seen dramatic reductions in the size of their mets, and in one case a person had a complete response  (mets gone).

 

As far as your brain mets establishing so quickly, I'm afraid that does happen, as it happened to me. I was diagnosed with bone mets in November 2009, and poodled along thinking everything was OK (in fact between October 2011 and March 2012 I was even told there was no evidence of disease). But suddenly it became apparent that things had kicked off in my spine, and with every scan it got worse. Consequently after trying Exemstane and Fulvetrant with no luck,  they did a biopsy in August 2012 of a node in my chest which showed my cancer had changed it's receptor. Instead of being strongly ER+ and weakly Prog+, and Her 2 negative, it had become strongly Her2 +,  moderately ER + and weakly Prof +.

Thus in Sept 2012 I started Herceptin and Capecitabine, but as you know Herceptin doesn't cross the blood brain barrier, and by December 2012 I was diagnosed with Brain and Meningeal Mets in the Dura. So in just three months I went from just having Bone mets to having Brain and Meningeal mets as well.

The fact is though that the seeds could have sat in my brain undetected waiting to get going right from the start, and sadly it was at that particular point it decided to make itself known.

 

Unfortunately a lot of cancer patients (not you), and cancer charities for that matter, like to believe the myth that when someone hits the five year mark after treatment they are cured (for example you see all the clap trap on charity sites about moving on after cancer). Sadly that is far from the truth. The Prof who treated me at CX say's that 40% of women diagnosed with stage 3 cancer will go on to be diagnosed stage 4, because at the original diagnosis secondaries were not observable. Similarly a lot of women with even stage 1 or 2 BC have recurrence because they had cells floating round their system undetected, and possibly kept at bay by drugs duch as Tamoxifen of Letrozole, and when they were taken off them after five years the cancer cells were no longer controlled. I honestly think that Charities that promote this "cured" thinking are doing their members a dis-service because when people have a recurrence or discover that  their cancer is stage four it is made all the more devastating by the fact that it was so unexpected. 

 

Anyway I hope your recent bout of sepsis is subsiding now (again I was admitted to hospital with that in May this year so I know how grim you must feel). Just get past the WBRT, rest, eat little and often, look after yourself and then decide your best move.

All the best,

Lesley  

Mildred1602
Member

Re: Newly Diagnosed with Brain Mets

Thank you so much for your response Lemongroove . I had noticed you had not been posting as much & was hoping all was as good as could be expected.

I had my planning session at St Barts today & have the first of 5 WBR blasts tomorrow. The radiologist says it could take a couple of weeks for side effects to kick in - hair loss, tiredness etc

I am feeling apprehensive about the future. I was diagnosed with bone mets New Year's Eve 2011. I have had quite a few treatment options as progression continued in bones.
Anastrozole/Zoladex/Pamidronate
Capecitabine for 8 cycles
Pamidronate switched to Zolendronic acid
Tamoxifen
Fulvestrant/Zoladex/Denosumab

A bone marrow biopsy in July 2013 confirmed bone marrow infiltration - my blood counts had remained v low after capecitabine.

The brain progression was very unexpected as a CT scan in April 2012 had not reported anything suspicious so in 5 months the cancer had found a new home. This diagnosis coincided with me becoming neutropenia septic & emergency admission to hospital.

I guess I'm just shell shocked at present at how quickly a relatively stable situation has turned into a very uncertain future.

Ingrid
Lemongrove
Member

Re: Newly Diagnosed with Brain Mets

Ingrid, sorry to read of your diagnosis. I too have Meningeal Mets, and three  Brain mets. You probably know quite a bit  about this already  but as others may not I will try and explain things, so that we all know what we're talking about, and don't start making suggestions that are unsuitable.

 

Meningeal metastases are really quite different to Brain Metastases. Brain metastases are those in the Brain, whereas Meningeal Metastases are mets that exist in the membrane surrounding the Brain  (the Meninges). In order to understand how this impacts on treatment options  it's first necessary  to understand how the membrane is constructed, as treatment options hang  on what part of the membrane is effected, how much involvement of the membrane there is, and how likely it is that cancer cells have entered the spinal fluid. 

 

The membrane consists of three layers. The layer closest to the brain is the Pia Mater, the middle layer is called the Arachnoid Mater and the outer layer closest to the skull is the Dura

 

If  Mets are localised within the Dura and there is no involvement of the spinal fluid then all the treatments used for Metastases in the Brain would be appropriate (Lap/Cap, Tamoxifen, Stereotactic RT and WBRT).  The reason SRT would be  possible is because the Dura is a hard outer layer,  and mets can be targeted , providing there are not too many. However, if you wanted Stereotactic RT treatment for Dural Mets you would have to self fund because NHS England only fund Mets  localised within the Brain which are under a total volume. The other problem is that many doctor assume that if Mets are observed within the Dura there is a chance they could have penetrated futher into the Dura, and treatment would then not be worthwhile.

 

If  Mets are in the Pia Mater or Arachnoid Mater, Chemo's and other systemic treatments that cross the Blood Brain barrier, would also be an option, but SRT would not as these two layers  are jelly like structures, and  so mets tend to thread throughout them, and there is no target as such. However WBRT is still an option as this does not require a target in the same way as SRT.

 

If Mets have spread throughout the three layers of the meninges, there is a possibility that it could have passed into the spinal fluid, and that makes treatment more difficult (but if doctors suspect this they usually do  a Spinal Tap  to search for cancer cells). If this test confirms involvement in the spinal fluid  things can be  more tricky. Systemic treatments are still available, but the delivery of it them is more difficult. It's not just that systemic treatments have to penetrate the Blood Brain Barrier, they also have to get into the spinal fluid as well - and the only way to do this is with intrathecal infusions into the spine. Similarly RT is much more difficult because  it is not possible to irradiate the entire spine, and usually there is no target (unless there is a collection of cells at a particular junction).

 

In any case, even if all the layers of the meninges had been crossed and the spinal fluid breached,  all is not lost. Intrathecal infusions can keep things at bay (and I have read of people surviving a few years with this treatment). Similarly, RT can be used if cells collect in a particular area , or are having an effect on the rest of the central nervous system, and this too can hold things at bay. 

 

To end this lengthy post I would like to say the  important thing to remember is  just because Mets have been observed in one place, doesn't  mean it's a forgone conclusion that they will go to X,Y or Z. Sometimes these things make an appearance and then just do nothing.  In my case, I was diagnosed with three Mets in the Brain, and more localised within the Dura just before last Christmas (2012).  Unfortunately, SRT is not an option for me because  my Dural Mets are a bit too extensive and in any case would make me ineligible NHSfunding . However, I have  been taking Lapatanib and Capecitabine since diagnosis, and no other BM's have popped up and the existing ones have halved in size.  Eventually if the Lap Cap fails and my BM's become symptomatic I will have WBRT, and pray it is as successful for me as it has been for others.

 

Anyway I hope this post is helpful. I am not a medical professional. I am simply passing on what has been explained to me at the Marsden. Best of luck with your treatment..

Boattripper
Member

Re: Newly Diagnosed with Brain Mets

Meandthedog, just noticed something about vision and dexamethazone in your post. Forgive me if you already know this connection, but I always get blurry vision with steroids. This came to a head when I was on a clinical trial and it became extreme. It was found that the steroid causes very high blood sugars in me which was causing the vision problem. I am now using insulin injections and metformin tablets to control it. I wasn't previously a diabetic and so this is why the link wasn't spotted, in fact I don't think my blood sugars were ever checked prior to the clinical trial.
Mildred1602
Member

Re: Newly Diagnosed with Brain Mets

The last 4 weeks have been surreal. A few days after the brain met diagnosis I had an emergency admission due to neutropenic sepsis. A couple of days on ICU followed by 10 days in a side room being pumped with IV antibiotics. I've now been at home a week but still feeling very weak. I suspect this is in part to the high dose of dexamethosone I'm on.
WBR planning session is this Thursday. I'm not looking forward to the treatment as I know I have to feel worse before I feel better!
Thank you ladies for your replies. Although OH & I feel alone some days, it helps to know others are out there.

Ingrid
Guest user
Not applicable

Re: Newly Diagnosed with Brain Mets

Hi Ingrid,
I hope your treatment went well. I have just completed my course of WBR. Like you I had a situation of massive headaches etc. & wasn't feeling well.

I don't know how you found the treatment. It was OK for me but a week on I have found it has wiped me out in that I am getting very tired. I can manage a short trip to a shop maybe with company or perhaps make a cake & that's about all I can do in a day at the moment.

I am on dexamethasone which I think is actually causing me a lot of weakness right now and I think affecting my vision quite badly. I'm looking forward to being able to reduce the dose when the radiologisrt gives the ok and see if any progress has been made. Overall I'm really optimistic but it is frustrating in the meantime

I do hope things have gone well for you so far.


Take care. Best wishes,

Meandthedog 🙂
Mildred1602
Member

Re: Newly Diagnosed with Brain Mets

Thanks for responding Liz

 

Unfortunately I'm not feeling very well. Oncologist & GP have been treating me for a stomach bug (as my husband was also unwell). All a bit of a red herring! So after nearly 3 weeks of nausea & sickness I'm quite weak & under the weather.

 

I've been advised to have WBR because as well as a brain met, the CT scan also suggests involvement in the meningeal layer which can not be treated stereotactically. I am on 16mg of dexamethasone at present to get the symptoms under control. I guess it just takes time to readjust to the "new normal" which tablets to take when etc.

 

The oncologist has not indicated that this is the end & is talking about chemo after the radiotherapy to give the cancer a good beating in my bones & bone marrow. But that's for a few weeks time........

 

Ingrid

NannieSpiky
Member

Re: Newly Diagnosed with Brain Mets

Hi Ingrid
I was diagnosed with brain mets in February ( I have two showing on scans). Was advised to have WBR but rejected it as feeling quite well so they put me on cape/lap combo which actually shrunk the mets for a short while but last scan showed them growing again. Have just had MRI scan done this week and neurosurgeons and oncs are meeting next week to discuss treatment but surgery has been mentioned as the mets are close to the outer skull and they may be able to cut them out and then give me linac radiotherapy to mop up any stray cells. Another option is stereotactic radiotherapy but there is the issue about funding for this. At the moment, I am feeling well and find it hard to relate to the images that I've seen on the scans and my general day to day living as I have only a slight headache from time to time which a co- codamol tablet usually clears although I am also on dexamethasone 2mg daily to keep the fluid down.
I try very hard not to think about my situation as it's quite scary and just concentrate living and enjoying day to day simple pleasures. Reading anything about brain mets is daunting and, usually, out of date, so I steer well clear of it all as we all respond to treatment differently. I regularly see a lady at our hospital who had WBR two years ago and she is still going along ok and trying out different chemo formulas but she is a very feisty lady so that probably helps!
I also remember feeling as though the stuffing had been knocked out of me when first told of the brain mets but I am now more accepting of my situation and my onc still gives me a very hopeful feeling and has certainly not written me off yet.
Good luck with your treatment.
Liz x

Sam_BCC
Member

Re: Newly Diagnosed with Brain Mets

Hi Mildred1602

 

I am sorry to read of your recent diagnosis, I'm sure some of the other users will be a long soon to offer you their support and experiences.  In the mean time if you need to talk things through do give the helpline a call on 0808 800 6000.  Here you can share you feelings an concerns with someone who will offer you a listtening ear as well as emotional support and practical information.

 

The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.

 

Best wishes Sam, BCC Facilitator

Mildred1602
Member

Newly Diagnosed with Brain Mets

Dear All

Looking for assistance after diagnosis with a brain & meningeal mets yesterday. OH & I are still reeling & any reading seems to make things worse. I'm going to have whole head radiotherapy with planning on Monday 30th Sept. Please can any ladies with recent experience of brain mets & treatments contact me?

Ingrid