lung cancer with brain mets

galwaygirl · New User Joined: 10 Feb 2008 Posts: 3

hi
my mom was diagnosed with lung cancer mid december. we were first told she had lung cancer in both lungs which would be treated with chemo. the following day we were told it had spread to her brain which would require whole brain radiation. the WBR happened in january, 5 sessions of 20 strength even though she didn't think she would lose her hair she did though that didn't happened for about three weeks. after having radiation, which in itself is painless, she developed a metallic taste in her mouth which she still has. She has been on steroids, 6 daily of 2mg but the heartburn was so severe she couldn't eat or drink without being in pain though she no longer suffers from headaches which started at the end of summer 2007. it wasn't until dec when she started staggering that we realised something serious was wrong though even then cancer was the last thing on our minds. she is currently on 1 2mg of steroids a day, she calls the lower dose a wonder drug because it keeps her on a 'high' and she continues to have a great appetite even though she can't taste anything. she has just recently had two minor seizures, trembling for head to toe for approx 1-2 minutes though she has no memory of this and we haven't told her. she has just started her anti-epiletic drugs, half a tablet twice a day, we told her it was to help her with her walking. over the past week to us she seems so much better, the walk is better and the mind is as sharp as it ever was though the pallative nurse called yesterday and informed us that the radiation is obviously kicking in now and she is getting the benefit of it. we were initally told she had between 4 weeks and 6 months, with the average being 12 weeks but she is so good at the moment surely if the diagnosis was correct she wouldn't be this good??! my family are in limbo, we have never experienced anything like this before, in fact i have every aunt,, uncle, cousin, friend that i ever had and i don't know what to expect or what to do, everyone tells us things will get much worse but if that were so surely she would be worse now, sorry if i'm rambling but to a certain extent its like time has stood still since christmas and we're not going forward and we're not going back. what should i do? Confused

brainman · Posted: Mon Feb 11, 2008 9:45 am Post subject: Re: lung cancer with brain mets

galwaygirl, I am very sorry about your mother's Lung Cancer. Do you know what type of lung cancer it is? There are two major groupings: Small Cell and Non Small Cell. It would help us to know at least which group her cancer is in.

Oh yes, I remember the steroid high very well Very Happy

. I felt so wonderful that I thought I could do almost anything and would live for ever. But when I was taken totally off of the steroids, I doped like a rock into water. I had no energy, no motivation, no will to live. It was so bad that they had to put me back on steroids and wean me off more gradually. I do not know how much of your mother's current good health is due to the steroids but I think to some degree steroids are a part.

I can see why your family is in limbo. The prognosis does not seem to match what you are observing. Here is what I think about progenies:

I like to know my prognosis but only to plan and set priorities for what I still want to do with what ever time I still have left. However, after making my "bucket list", I try to just forget my prognosis and to live one day at a time working on achieving my goals.

I am concerned that you have not told your mother that she is having seizures. I would encourage you to tell her. She needs to know in order to make informed decisions about treatment options and decisions about what she can and cannot do. I am on anti-seizure medication myself so I do not have any plans to go hiking the Appalachian Trail (something I dreamed of doing all my life). There are so many other minor decision she needs to make on a daily basis that she should know the dangers involved.

Finally, try to make the most out of whatever time you still have with your mother. Ask her what she would like to do and then do everything in your power to do those things. Ask her if she would like to see or talk with some from her past and try to contact them to let them know about her desire. In other words, while you may not be able to control the quantity of live your mother may still have, you can make a big impact on its quality.

You and your mother are in my thoughts and prayers.
_________________
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Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
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galwaygirl · New User Joined: 10 Feb 2008 Posts: 3

hi brainman
thanks for your reply, my mum has the type of cancer you get from smoking which she has done nearly all her life. The doctor weaned her off steroids at one stage and her staggering got immediately worse so he has put her back on one 2mg a day because that is what she wanted. I think he allowed it because it keeps her happy and she thinks it helps. He offered her chemo but she refuses and he said he would encourage her to get chemo if he thought it would be off benefit and that was as much as he said. I really don't know about telling her about the seizures because i'm beginning to think that that if she believes she is worse she will be worse. the two days she was without steroids was horrendous and realistically one steroid a day isn't really making a huge amount of difference to her condition but she thinks it is. Dunno, as i said we are all new to this and don't really want to make things worse than what they are.
Thanks again

pbj11 · Site Admin Joined: 12 May 2007 Posts: 852

Galwaygirl,

Sorry about your Mom's diagnosis. She could have either SCLC or NSCLC Squamous, as those are the types usually associated with current smokers.

I have no experience with steroids. She was diagnosed at a late stage, as so many are with lung cancer. Glad to hear her appetite is good. Sometimes eating with plastic silverware helps. The metallic taste is often from chemotherapy, but you don't indicate she is doing chemo. It also sounds like they radiated her chest too with your heartburn description.

Lung cancer is a strange beast and when things start to go downhill, they do it rapidly. Enjoy your time with her and I wish nothing but the best for your Mom and your family.

Was there any reason she didn't want to do chemotherapy? It probably won't save her life, but one never knows! There is always that small percentage chance and always hope.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

galwaygirl · New User Joined: 10 Feb 2008 Posts: 3

hi again

Mum only had whole brain radiation, they reckon the heartburn was from the high dose of steroids so they reduced the mg which has made her life so much easier, at the time of the heartburn she couldn't even enjoy her cup of tea, she doesn't want chemo as she knows many who have gone down that route to no avail, she is 69 and reckons we have had her for long enough but i don't think you can ever get used to your mum dying whatever the age. The pallative nurse called today but she got really upset which isn't like my mum, she says she sees the nurse as someone who will ease her out of life and she doesn't want to deal with that at the moment, i actually don't know if she will ever come to terms with this, it is so difficult for us i have no idea how my mum continues everyday. The doctor is going to increase her anti-epiletic drugs today because of the seizures and she has started on mysostin, its like an eyedropper of a gel like substance to help prevent thrush in the mouth and infections, hopefully this could help with getting back her sense of taste. At the moment she is doing great, only for the moon shaped face due to the steroids and the loss of hair from the WBR you would be hard pushed to know there was anything wrong. Her walk is slower though and its like she has aged 20 years in terms of ability since she was diagnoses though she is still giving orders and giving out so when that stops we know we're in trouble.
Thank you for your replies

pbj11 · Site Admin Joined: 12 May 2007 Posts: 852

Galwaygirl,

I understand you mother's decision and have to say I feel the same way after watching loved ones fight a one-sided battle. It's horrible from your perspective, and I know this from losing my mom too. Love her and spend time with her as she is able.

Sometimes a person never wants to accept hospice/palliative help and it certainly must have her head swimming coming so soon after diagnosis. The outside help is good for the family members, but I understand her balking about it already.

You're between a rock and a hard place and it stinks. I'm so sorry and wish for many more months of time for your mom.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

RLW1 · Regular Joined: 03 Nov 2007 Posts: 31

Galwaygirl,
How's your mom? Seems like steroids = good appetite but bad taste. If your mom needs something for the metallic taste, ask your physician for "Magic Mouthwash". That may help. It helped my wife. I don't know what's in the mouthwash but it beats back the thrush which I'm told is a by-product of the steroids.
RLW

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