Brain Mets Sisters
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I haven't felt sure enough, to drive in 3months. I am sure I could drive, but should I? Thank goodness, I spent my life driving four kids and anyone who needed a ride ( driver) . They are all happy to return the favor. Our home, has always been 6 miles from town. Our kids do not mind driving me now. Hugs Jodi.
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Hi,
I, too was just diagnosed via MRI on Friday that I have 4 small tumors in my brain. Started with mets to bone 4 years ago and liver mets 1/2011. I wasn't really symptomatic but was having some balane issues and inconsistant throbing in the back of my head. Hadn"t had an MRI for a long time and so ask if I could get one. I guess it was good to know sooner. Right now I am waiting to hear what the plan of attack is. I just had a PET/CT a month ago and nothing showed up (at least in the brain). I know as was mentioned above, that when I have a plan it will be a lot better but right now I am feeling so sad.
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Darn it Marc2terry. I am sad for you. You have been doing this for a while. This just one more bump in the road. The radiation has it's own set of side effects, much like chemo. You sound like a strong girl. We are all rooting for you and your well being. This had got to be the strangest reality EVER. One day at a time...Hugs Jodi
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Thanks Jody. It means a lot.
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Hi Tracy,
I was never told not to drive even though I had 20 mets, basically because I had shown no brain symptoms, only rib pain. I chose not to drive, though, because I was concerned about my level of concentration while dealing mentally with the diagnosis. I am driving again now but have been having some dizzy/nausea spells that originate from my head so another brain scan tomorrow - all could change...
Like your spirit.
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Does anyone know where one can get intrathecal herceptin anywhere in the world except for the two clinical trails going on in Chicago and France? My wife needs this right now and did not manage to enrole her to one of these, so anyone might know another place?
Regards
Mario
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my onc. was astounded when i told her i was still driving to my rather far away organ jobs and advised against it... so. now i don't travel on busy roads, during rush hour,, basically, rarely. I do take back roads to garage sales, the bank and some nearby shops. I can buy makeup underwear and there is a walmart (not bad for plants). My son picks up my daughter, and my other son drives me to my organ jobs. I feel perfectly confident when driving but choose to not endanger others just in case. I have a wonderful friend who will drive me anywhere and she often takes me shopping, garage sale-ing and my bro takes me to estate sales. I miss the feeling of flying.. I have always loved driving.
I seems the effects of the radiation are going away. My words were a bit slurry there for a while. It's kind of like recovering from my big seizure altho that was totally devastating. I don't even remember the 3 or 4 weeks i slept on the couch. I do remember not remembering where the silverware drawer was, time after time after time. But it all came back. .. I'm having an MRI on the 7th.. My remaining boob has 'activity' so i'll have to decide what to do with it.. A mastectomy i imagine, if my brain mets are not taking over. there is always something.. feel good tho!
Marc2terry - i hope you feel better soon.. brain mets are such a sad diagnosis, but like stage 4, cancer just in itself, we come to accept it and become comfortable.. wishing you happiness.
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Hey, has anyone here had Physical Therapy for the side effects (weakness, neuropathy limping etc) ? Does it work? Thank you.
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it would have to jodi..
in spite of cancer, i think our body would gravitate toward healing itself.
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Thank you Apple. Anything will help I suppose. I am sick of being my wobbly self. My right hand is like a stranger. I am now trying to live left handed. Between that and dragging my right foot... What the helicopter??? I hope you have a nice, peacefilled day. Hugs. Jodi I will let you know what the physical terrorist says...
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good nite gals.. hope you have a better day then I had today.. kind of depressed because of a can of adobe peppers in sauce and tired. i mostly read, but did do laundry and cook dinner which was good. .
tomorrow is another day.
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My onc highly suggested I don't drive with brain mets even if I felt good because there is that slight chance of a seizure, getting disoriented or dizzy. I haven't driven since the end of December and I absolutly hate it. I feel so dependent and on top of that being told I can't drive the new car I just bought months before is dishearting. It was the car I wanted FINALLY after all these years. Oh.........the joys of a cancer patient. On top of that because I get dizzy and wobbly now my family won't leave me alone since December. Ugh!!!
I guess I'm lucky that they care and will bring me anywhere I want or need to go and are working really hard to make me feel independent like I've alwas been.
Jenn3
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I had my second opinion interview yesterday, six months after diagnosis! Bit late, you might think, but I had so many queries that were going unanswered by the oncologist or which I was still puzzled about and I had missed some treatments because he didn't order them.
Professor Ko was absolutely great with me. I had listed my questions and he went through them patiently, with clear explanations, drawn diagrams, etc.
One of the things I wanted to check was why I began as HER2+3 in October and ended up as Triple Negative in February - so he is going to investigate with the pathologist who did the test to get me an explanation. He is pretty sure it is accurate because he thinks the first test was done on the biopsy and the second done on the tumours that were taken away.
I also asked him about chemo treatment having the effect of changing positive receptors to negative ones and vice versa. He agreed this can happen but said only in 10-15% of patients and over a period of about ten years. This took away any hope that my receptors would change. However, to be clear-minded and to have these answers in the end makes us more realistic.
Although the doctor brotherhood is protective of each other, he did agree with me that my oncologist has a personality which sends some patients elsewhere but he also said that he is one of the most respected and experienced guys here and that the treatment plan I am on is exactly the one he would recommend. When I asked about my four missing bone infusion treatments, the professor smiled and said, 'You know what? He forgot' (which, of course, is what I thought). However, he said that the Bondronat builds up bone protection by layers and they stay there and work on a long term basis so he doesn't think I have suffered because of it as I had one and am now starting monthly ones.
So instead of storming off to another oncologist in a fit of pique and abandonment, I now feel much better informed and will wait until my scans are done and take a few weeks to make my decision whether to go or stay. As to my fears about my brain scan tomorrow because of my dizziness and nausea, he did say it might be due to some oedema after the WBR, so that was a little light of hope. I have the scan on 4th so will soon find out.
Apple, good luck with yours - if I remember, you have one coming up in a few days (on your birthday, I think!). Hopes and best wishes for you.
Barbara
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Hi sisters, doc's leaning toward gamma knife, but will know more after tumor board meets tomorrow. WhAt a roller coaster. It is weird though, if this had happened 11 years ago with my first dx, I would have been in bed, depressed and not very functional. Now though, having lived through the highs and lows of scanxiety, I am doing ok (well, of course that is after melting down when told on Friday). Maybe it is the decadron. I told my onc. that I was doing ok on it but the only thing is that when I meditate, I want to do all the talking
I was told today that I can taper and go off that. Now I can sleep. Good night.0 -
Barbara, so glad you had a helpful consult with the second opinion guy. It feels so nice just to get grounded direction sometimes! We have so much that we have to try to figure out all on our own, that having another grownup in the mix can help so much.
Scan girls, you know we're all here for you. Put a hand on our shoulders, and if we don't get knocked over from all our balance issues, we are there to hold you UP!
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i finally got something done this morning.. i sat around in a blue funk all day yesterday. kind of on strike.
I re-hung pictures.. my husband went around and put prints up.. thing is, is that we have some really neat, original and historical pieces that he mindlessly put in the kids game room.. so i had to fix it.
PJB - I gotta chuckle out of the supporting each other with the totters image. I have just enough unbalance so that i look like I am slightly drunk at times.
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Thanks, PJB - I have lost 11 kg since diagnosis so the leaning will be less heavy than before!
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Hi everyone. Just got back from physical therapy and I thought I'd share what was said. Because the weakness and neuropathy were caused by either tumors and/or chemo, the therapist said this is very much like a stroke. I need to retrain my big brain to reroute it's signals to my muscles. She gave me some pretty good exercises for my right foot and leg. I can do all of them at home with no equipment. One of them is really quite interesting. Try putting your weak foot/leg, directly behind your good foot, toe to heal. The idea is to strengthen your balance. Make sure you have something to grab on to. It is amazing how much harder to do with my jacked leg. Anyway, the therapist was very nice, and I think she was stunned by my stubborness. I am not quite ready for a brace or a cane. I will be slow ajnd steady instead. I go back in 2 weeks for an assessment of my progress. Oh goodie!! Hugs Jodi
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Apple, I am sick of looking like a drunk. Especially since I don't have the buzz!!
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Jodi, really pleased to hear there is something you can work on to improve your physical condition - it's lovely to have something in your control with a goal - I really hope you see some improvement and the therapist sounds good.
Back from my brain scan and the radiologist was astonished that it is completely clear! My DH and I were almost numb when we went in for the analysis and the guy just told me that I have been really lucky in my treatment response and he was astonished to see nothing there. There wasn't even any oedema, so my dizzy/nauseous episodes are caused by something else, which now needs investigating, although the steroids have sent them flying this week. He also made my day in another way - three times through the conversation he said I was looking amazingly good.
I know this can't last for ever but oh, what a feeling right now!
Sending all this happy positivity out to all of you today,
Barbara x
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i can't tell you how absolutely happy i am for you Barbara.
seize the day
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Wonderful, wondeful, Barbara! How long had it been since the zaps? What a great response!
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So, those who have had WBR have your hair come back yet? My last treatment was February 22. When does it return?
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Big, big happy dance Barbara!!! Fabulous news to be taking into the weekend
Laurie x
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Great news Barbara! No brain buggers.
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PJB, I finished in November and had a scan in February which showed 20 metastases all gone except for one 'stem' - naturally, I feared this must have grown and be causing the symptoms I've been having recently. Normally, they would not have done another scan so soon but the doctors thought my symptoms indicated there might be recurrence. The real joy is that the 'stem' itself has gone during the last couple of months, which shows how long the WBR goes on working. The radiologist said brain metastases vary in their resistance to treatment and I've been very lucky. So all that fatigue after WBR might come from the activity still going on - maybe that should be reassuring instead of frustrating.
Tiger Blood - quarter of an inch now of hair, only started growing a mongth ago.
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Barbara. you have made my day! Enjoy your met free existance. Why are you still on steroids? If you don't mind me asking.
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- BanjoBanjo - Congratulations on the good news! Time to celebrate!
- jodimomoffour - sounds like a doable plan. Wishing you the best!
- Brain Mets Gang - Hang in there and have a nice weekend!
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Ready to be jealous? My darling hubby is taking me to Maui for 7 long, sunsoaked days!!! I have been on line all morning, looking at muu muus. So darn exciting. I was thinking of a bikini, toothbrush. and a couple muu muus is all I need to pack!! That, and an under inflated raft to live in!!! We leave on the 20th of June. I am going to be black when I get home. My hubby will be pinker than normal!!! My Pordaguee will have me looking like an islander!! So exciting!! Aloha!
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plan on getting leid
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