Starting treatment

Hi everyone, It's me Jo baby. I haven't posted in a while. well i finally got some answers. I had to get a new Dr to get them. So the mass is not actually in my brain there is 2 areas both on the dura which is the sac that encases the brain. It is a rarity for a marginal zone b cell to travelthere but it did. I have an MRI scheduled for next Wed to make sure my spine is clear, and then I will start treatment. My case went to the tumor board yesterday. They decided that I would get high dose methotrexate, and possible rotaxin, probably spelled that wrong. I guess I'll have to be in the hospital for my tratments. I'm waiting to hear back to find out exactly when it'll start. I was wondering has anyone else been on high dose methotrexate, if so did you loose your hair? Did you get real sick? Well hope every one is feeling good. It's been such a beautiful day today. I hope it stays a while and that the snow is gone for good. It makes me feel so much better when the weather is nice. i have the doors open and the freach air coming in. It's lovely. Enjoy the spring it's the best time of year. It's a freash new strt with everything regrowing. Don't forget to stop and smell the flowers......JO

sorry for all the bad spelling been a long day haha..JO

please..doanut wry bout the spellin'
Happy you finally got a DX and are starting your path to recovery.
Keep that attitude up. I know, believe me I know,I know how hard it is. But tis better to work on the attitude then to wry 'bout the dx. I KNOW you will come out of this a winner. You already are. You are one of my heroes.
peace.

Hi JoBaby,Glad to see your finally getting treatment.My aunt did high does of Methotrexate it damages the heart.Please discuss this drug with your onc concerning your heart.I do know this is one drug they use for the brain.My onc.is sending me for an MRI of the brain before my next treatment along with my pet/ct.I have had alot pain and pressure in one eye,headaches then yesterday my knee swelled all this on my left side.I don't know better to be safe.I like you love the warm weather all I want to do is sit on my porch. Hugs to you,Michele

I got my treatments in the hospital because they were 7 hours long, but I did not spend the night. I never got an mri of my brain, they just took samples from my spine and determined somehow it was in my brain.
It will be ok. Good luck and hang in there!

wow, I wonder why I Have to stay in the hospital. They said it was because the methotrexate is very toxic to the kidneys and after the treatment they will flush my system, and i cant leave until my kidneys show all the poison is out of my system then i can go home until the next treatment. I wonder if their just being more causious with me because i have lupus which affects the kidneys to? I think i will ask... thanks for the info. hopeyour well today..Jo

Hi JoBaby,It’s better to be safe then sorry as we need our kidneys.Lets face it you have more then enough on your plate right now.Hope your treatments go smoothly.Hugs,Michele

You are probably right. I don't know. The thing is though they wanted to put me in the hospital from the onset because I was stage 4 but I had requested that I really wanted to be at home. I told my fabulous and great doctor if she wanted me in the hospital I would go but that I really wanted to be home. The hospital is near by. I have not said it on this list because I don't want to be scary, but I did go neutropenic after Chemo 3 and was put in the ICU and spent almost a week in the hospital. But that is a side effect from Rituxan and had I known about it I would of been more careful. People visited me with small children and I caught a cold and one thing led to another.

I can not guess why they are keeping you but perhaps it is to keep you from getting infections. Also they might be giving you the methotrexate a different way then they gave it to me. They gave me a spinal tap. I had so many friends taking care of me, I don't think they were super worried about me. I never drove, I always had people around and and I had specifically requested no hospital stays. I eat really health, hate hospital food and I don't really watch tv so the idea of it, the expense, it all seemed really wasteful for my insurance.

All I can say is sit really still for it. If you have a spinal tap like I did and you move when that needle is in you kind of have a little pain for a few days. I had four sessions and I moved a little on one of them.

You will be fine. It will be over in no time. Don't worry. It worked like a charm for me. No cancer here. They really know what they are doing these days. If you have to stay in the hospital, just enjoy the rest and people bringing you things. You will probably need the rest right after that. Maybe you can find someone else who has a worse prognosis while you are there and be of service to them in some way.

Methotraxate is more serious then other chemo drugs so I bet they just want to monitor you. It is an older drug and I don't think they use it a lot anymore. I guess it is the right drug to blast this out of your brain and it worked for me. I don't know anything about lupus so you are probably more right then my ideas with your suspicion. I think this drug might be hard on your kidneys. The pain I was referring to above, while not terrible or anything, was in that kidney area.

So hang there and good luck. It will be over before you know it. I will be praying for you this week.

Reading your post again, I am sure it is because they want to flush out your kidneys. I think it sounds really good they are on top of that.

Thinking of you, Jo. And sending thoughts of easy treatment to you. Lots of them. You are going to do this...and you are going to write about it.

Thanks for all the replys. I'm not sure yet how it will be administered but if my mri of my spine comes back clear tonight then I think it will be in a port not spinal tap because it's only in the Dura so they don't need to cross the blood brain barrier. Ya I'm nervous about it. Do you know if children are allowed to visit the cancer ward. I was thinking probably not, I will ask. Anyways thanks again and I will keep in touch....Jo

I just got off the phone with onc dr. Their scheduling a MUGA scan to check my heart before Chemo. And scheduling to get the port put in so it might be another week or 2 before treatment starts, but I'll know more tomorrow, and even more Friday.....JO

Oh Man. Jo Baby. Patience is a virtue I am no good at. I am sorry you have to wait.

Me neither. I am not a patient person at all. i hate it, but I guess I dont have a choice in the matter. Guess we gotta make sure the ticker is ok before they poison it. HAHA. well i let you know how it goes. getting reafy to go have the MRI in about an hour...Talk to ya later...Jo

Yeah. Let me know.

Jo Baby, I was diagnosed with Stage 4 Primary Central Nervous System Diffuse Large B-Cell Lymphoma in Nov. 2010. I had a seizure in Oct and then another one in Nov that lasted 7 hours. I had 3 lesions in my brain. Pet Scan, Bone Marrow Biopsy and Lumbar Puncture determined that the cancer was nowhere else. They started with a low dose (2 mg) of Methotrexate, which is one of the few drugs that penetrates the blood/brain barrier plus Vincristine and Procarbazine. The Methotrexate is so toxic that they start flushing it out with Leucovorin right away and in my case, I coudn't go home until the level got to below .05. The first cycle it took about 6 days. I didn't get nauseated but got constipated. The next cycle and every one after that, they started with Rituxin first. They were in such a hurry to start the treatment the first cycle that they skipped the Rituxan. They discontinued the Vincristine after the second cycle because I lost my voice and I started getting neuropathy in my hands and feet. They upped my Methotrexate level the second cycle because I did well the first time but it took 14 days to clear at the higher dose so they took it back to original dose for the last 4 cycles. I never lost my hair but it seemed to stop growing and got very fuzzy. After the first cycle I had the runs every time for a few days and the usual weakness and fatigue but no nausea. My last treatment was in March and I'm in remission now. The weakness and fatigue is slowly getting better. Good luck with your Methotrexate treatment. It's no fun and the waiting for it to clear was the worse part of it for me and my wife but the outcome was worth it.

How can we find future comments made since these posts in April? Do we go to her name somehow? Poor thing. Would like to know how she is doing;/