Some help please!

[CassyD]

Hi everyone,

My mum has been diagnosed with NCSLC with mets to the brain a couple of months ago and she does not know the full extent of her prognosis (we live in England and her English isn't so good).

She first saw the oncologist alone while she was in hospital and from what she said they were going to give her 4 days of radiation therapy followed by chemo depending on how well she does on the rad. Anyway to cut a long story short after 4 days of whole brain radiation we found out at the subsequent appt that they have not planned any more rad or chemo because she is not considered fit for it.

I am at a lost. From my own research 4 days of rad seems totally not enough and when I questioned them they said if they do anymore it would damage her brain. And to qualify for chemo she needs to be not on steroids.

She is taking steroids however the dose has come down since the rad. She is fine apart from her walking is unsteady and her legs feels weak most days.

Hope you can help!

D

[mhutch1366]

Hi Cassy,

Welcome to the club no one wants to belong to.

I'm sorry I can't be helpful about your mother's treatment, but there are quite a few here who have dealt with brain mets who might advise you best.

It does sound however as though the doctors really aren't trying. Is there more in your mother's medical history that affects this? You didnt mention her primary tumor.

I would advise a second opinion if that's a possibility with the UK system, which I know nothing about.

Good luck and keep us posted.

XOXOXOX

Prayers, always.

MaryAnn

[ginnyde]

Cassy,

I agree with MaryAnn and again I don't know how your health system works.

But 4 rads don't accomplish anything I would think. Can you get a second opinion? Is your Mother's health otherwise ok? It is most unusual in the USA anyway for the drs. to give up so soon.

[Don Wood]

Hi, Cassy! Sorry about your mum. I am not a physician, but two things strike me as strange. (1) Only 4 radiation treatments. I don't know about brain mets, but bone mets and other tissue mets usually take at least 10-14 treatments. (2) No chemo because of steroids. My wife was given steroids going into each treatment of chemo for nausea. I would agree about getting another opinon. You will find that many docs are limited in their thinking, and you need to know all of what is available. Also, if you can arrange, someone should always be with your mum when she consults with the physician. This way, you get more info and more questions answered. Keep us posted. We are here for you. Don

[Debaroo]

cassie, I would also like to begin by welcoming you, I am sorry that you have to be here, but it is a good thing that you found us-the information and support here are invaluable to me.

Now, regarding the brain mets, depending mostly on the size of the tumors on the brain-your mother may be a candidate for a procedure called gamma knife-it can be done after radiation (as some people have had the necessity of shrinking the brain mets before gamma knife was possible). My dad had this procedure done on his three brain mets and it was amazing how it worked.

Gamma knife is radiation that actually is so precise that any healthy brain tissue is left unharmed. The 'rays' of radiation are focused soley on the brain mets-done in one session, one target for each met, each dose is specified to that particular met, depending on size.

I was told by the neurologist that they have done Gamma on up to 5 lesions, and on lesions 4cm and less. If the lesions are larger radiation can be done to shrink them first, than the GK would be done. I was told that the location of the mets did not matter, but the shape did-if the tumors were spider-like, than it would not be possible. But more symmetrical shaped tumors would be able to be treated with GK..

The patient can be on steriods (actually, you should be on steriods) before, during and sometime after the procedure, being slowly weaned off of them. Blood thinners could not be used after the G.K. because of the increase risk of annurism-or stroke, my dad did develop blood clots in his leg, and was treated with a 'filter' to protect the heart/lungs from any clot that was to disloge, and 1 baby asprin a day or every other day (I forget) to shrink the clots.

The tumors are virtually killed with the 1 treatment, and are then reabsorbed by the body at the same rate as the rate they were growing in in the first place.

I agree with my friends here that your mothers doctors are not being very pro-active. And I believe my dad was on steriods during chemo, too. Or it may have been Iressa and the steroids...yes, it was Iressa at the same time as the steroids. Iressa is something else you can look into. When it works, it works wonders!

I hope that this was of some help to you, if you need anything clarified, feel free to PM me. I wish you and your mother luck in this fight, it is a battle where knowledge, support and a positive attitude are the best weapons for the first line of defence, with those things to guide you, all things are possible!! Take care, and please keep us posted. Deb

[CassyD]

Hi everyone

Thankyou all so much for your replies and I am so glad I found this place.

Since my last post I have been trying to get a second opinion and also looking at private health care options but it has been more difficult than I thought. (The UK operates a national health service and we don't have private med insurance as do most people here.) It just upsets me so much when the doctors looks at you and tell you that "I think you are cluthing at straws".

Anyway I am not giving up and am looking at Gammaknife radiosugery. My mum's primary tumour is a 3cm adenocarcinoma on the left lung which is not causing any symtoms at the moment and hopefully this would goes to help her suitability for gammaknife in someways. Thankyou for letting me know of this treatment.

CassyD

[Jana_W]

Hi CassyD

Sorry you had to find us, but glad you did. This site has the most wonderful group of supportive people, and is an amazing source of information.

I, too, would recommend getting a second opinion. My Mum is a Stage IV NSCLC and she also has taken steroids during her chemo, so I do not understand why that is precluding your Mum from chemo. Do you know what type of steroid she is on? Are they for a different condition from the cancer? Maybe this makes a difference, but I really don't know.

I would think that if your Mum is otherwise well then the doctor is terrible for telling you that you are clutching at straws. As long as she is breathing there is hope. And it sounds like she is doing alot more than that.

Have you considered alternative therapies? There is a forum specifically for alternative therapies that has a wealth of useful information if this is a path your Mum would be interested in exploring.

Please keep us posted on how your Mum is going. I hope you are going OK too.

Thinking of you

Jana

xxxx