marym

Linda, I'll pray for Mike and you. Mary

Congrats! I'm coming on my 1 year - where the original diagnosis included 6 to 12 months survival.....and I'm feeling great! Hope you have many more. Maureen

Hi All, Just got the results of my brain Pet scan. The area suspected as necrosis is just that - but unfortunately there is another small met. They have scheduled stereotactic surgery for 4/13. I'm really bummed, but I remind myself that it could be a lot worse. They'll do an MRI the day before just to be certain, but he feels confident that the diagnosis is correct. I just hope this isn't something I need to do every so many months (I had it originally in July). Mary

Ginnie, I'm terribly sorry about your brother. Hope your scan results are good - I'll say a prayer. Mary

Linda, You and Mike are both in my prayers. I'm so sorry to hear the bad news. Mary

I have had the radio surgery and it's not a big deal. No side effects really. In fact, I just learned today that I have another met and will be having a second radio surgery April 13th. The only pain associated with it is the initial needle to numb the area that they screw the halo into. That hurts for a second or two at each of the 4 locations. There was no pain after the fact. Good luck to your mom. Mary

Thanks for all your responses. The doctor called this morning an said the tumor board believes the lesion showing on my MRI is scar tissue. Instead of stereotactic surgery, I will be having a brain pet scan in 2 weeks. If it shows as cold, they'll just leave it and continue MRI's every 3 months. I'm hoping! Maureen

Hi All, Just recd news that my MRI showed a new brain met. Probably will have stereotactic radiation, but I'm waiting to hear. I have been doing so well - and was really surprised at the finding. I have no symptoms, and feel great. I'm dreading another treatment of the radiation just because of the pain of screwing on the head contraption. I know some places do not use the haed gear. Anyone have stereotactic radiation without the head gear? Mary

Linda, Hope Mike continues to feel great. I was dx last May and have felt great most of the time. I had some problems with withdrawal from Decadron and last week I had some pain (maybe from a bone met). I am seeing the radiation onc Fri, although the pain is gone now. But for the better part of the last 10 months, I have felt quite normal. Good luck. Mary

Trish, I'm so pleased at your good news. I pray everyone on the board has an opportunity to have great news. Keep up the fight! Mary

I have had a problem with my white count for 3 weeks last cycle and 3 weeks this cycle. Nulasta can only be given 24 hours after chemo and 14 days before chemo. So they tried nuepogen with me - 24 hours, 48 hours and 72 hours after chemo trying to get the counts up enough for another chemo session. It worked once and didn't the second time. This can be given with 4 days of the next chemo. I stay away from anyone who is ill and also stay out of places that might have a lot of germs - airport, grocery stores. Even at church I sit by myself and won't shake anyone's hand when a greeting is suggested. I haven't been sick yet - but I did have to miss seeing two neices at Christmas. (They stayed home). I also have a rule that everyone who enters my hours washes their hands first thing. No one minds. I have a ct tomorrow and then see the DR Thurs to see what he suggest now. Good luck Mary

Hi Z, I had 8 cycles of the gemcitibine/carbo. Shrinkage after 6 cycles was over 50%. I get anothe ct tomorrow to see the results of the last 2 cycles. My big problem has been blood counts. In fact I only had 1 treatment for each of the last 2 cycles. My white count has been low over the last few cycles and my platelets have also been low twice. My hair thinned - but I did not lose it. And once or twice I had some nausea (compazine took care of it). Good luck! Mary

Hi, Can anyone tell me about stopping treatment. I am quite well but after 7 cycles, I'm having difficulty with my blood counts and may have reached maximum efficiency for this treatment. The trial coordinator said I may have this treatment discontinued. The doctor might offer another treatment or may take a wait and see attitude - until they see progression. Also said that although my tumor was large, the center was probably dead and only the outside was active. Even then, much of it might be scar tissue. My question is if they stop chemo, isn't there a risk of more mets? I have no symptoms of lung disease - but I have had pain from mets, before radiation. Can anyone tell me their experience with a halt in treatment? Did anyone have success with the treatment but then have it stopped without a replacement treatment? I have a few weeks before I'll be faced with this (one more cycle and CT), so if you can help with questions I should ask, please let me know. Thanks. Mary

Tann, I'll say a prayer for you. I'm sorry to hear the news and hope for the best. Mary

Hi, I have found the chemo is cumulative in that my white blood count does not come back as quickly. My side effects have not been worse. I also take compazine to ensure I do not get nausea. Now taking nuepogen for the white count causes bone ache. I'm on my 8th cycle. Mary

Hi, I found taking the antinausea meds, needed or not was a good idea. I'm on prochlorperazine and it works fine. I usually take it day 3, 4, and 5 after the first chemo in my cycle. The second chemo is only one drug (gemcitibine) and that doesn't have the same effect. I do get sleepy from the meds, but it's a good trade off. I also get pre chemo pills and intravenous meds to help. That lets me have the first couple of days without the antinausea meds. Good luck. Mary

There is no reason for the pain - the doctor can provide relief, but trial and error is sometimes needed. Maybe you can request a referral for pain management. For someone who is considered to be well for another few years, pain relief should be available without having him sleeping all day. Good luck. Mary

Hi, I suspect it means nothing bad. I know I had a pet scan ordered when I had a brain met that was radiated. The next 2 MRIs were inconclusive as to whether the tumor was still there or was it scar tissue. So they had a brain pet done to check, (fortunately it was cold). Good luck, let us know how it works out. Mary

Tammy, Like most of the responses, mine is also a yes. Chemo has been fairly easy for me - I start my 8th cycle next week. I have only had nausea a few times and the pills handle that. Other than that, I have had a few times where I was tired and needed extra sleep, and one period where I was quite achy, attributed to a drug taken for my white cells. Living a few more years is worth the minimal side effects. Best wishes. Mary

I had the mouthwash - it was mixed by the pharmicist and worked great. My included 4 items - lidocaine, nystatin, benedryl and maalox. I was told to swish and swallow. Do see a doctor - thrush can be painful and can also spread. It's easy to get rid of - I took a pill once a day for 2 weeks. Good luck. Mary

Jim, Good to hear your news. I'm hoping to be in your camp as I continue down the chemo road. (I'm still on the gemcitibine/carbo-tomorrow ends ny 7th cycle). Hope you continue to have good news. Mary

I'm in a trial that began with a biopsy to determine which chemo would be most effective on my tumor. The study had 4 options for treatment based on the biopsy results. I'm on Gemcitibine and Carboplatin. I would be interested if there is treatment that is more targeted, since I assume my treatment will soon reach optimum results. Mary

I'm still on chemo - but have the same problem. Each test starts a new cycle of worry. Fortunately my chemo has not been difficult to handle, except fo the blood counts. I try to not think about the results, or the tests until I'm with the doctor. By keeping busy (even if only reading or watching tv) I can usually keep my thoughts on other things. Nights are when it haunts me. But I pray for good results and/or the strength I need to deal. Best wishes. Mary

Tann, I have been on the 3 week gemcitbine/carboplatin for about 6 months. I've had shrinkage of about 50% and almost no side effects. I feel fine, and do everything I did before cancer. I had mets to the arm and brain and had radiation for these. I also take morphine sulphate (30mg twice a day) and celebrex (200 mg twice a day). I don't have pain and have been great. Hope you have good results - keep trying the pain killers. You need to get to where you never get to the point of pain. Best wishes. Mary

The wait shouldn't be a problem - the doctor would tell her waiting isn't recommended if he felt there was a risk. Try to stop worrying - what will be..... I'll say a prayer that things work out. Mary