Metastatic Melanoma and need a miracle!

sodapop

ksplat, thanks a bunch. I can always use another supporter and appreciate the kind words.

I have a plasma TV, but haven't heard of a treatment called plasma, what is it? Surprised

My next question is, when do I get to become an experienced user and move up the ranks Inica??? haha, Laughing

Thanks again ksplat!
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Can miracles happen?

http://cancerforums.net/viewtopic.php?t=7254

Sodapop--aka "the survivor"!

ksplat · Posted: Tue Oct 09, 2007 5:07 am Post subject: Sodapop

Dear Sodapop,

Thanks for your interest. Plasma is plasmapharesis where donor plasma is transfused to replace your own. My problem was an auto immune problem & they thought by replacing my plasma they may get rid of the immunity problems I had. It made me extremely ill with little benefit. My kidneys still failed from the illness & I almost died from pulmonary haemmorage (bleeding in the lungs).

Also I wanted to say "miracles do happen"!

I will keep you in my thoughts & prayers.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Paul619 · New User Joined: 17 Oct 2007 Posts: 1 Location: san diego

i too need a miracle. im a 24 year old male, broke both my legs, tore my knee, and broke my hand in a motorcycle accident the day after christmas, and 2 months later diagnosed with stage 4 melanoma...but the primary spot was in my brain!!! it started with a stroke that lasted about 4 days and i was disoriented, confused, fatigued. after a cat scan showed i had about a cup of blood on my brain and a tumor the size of a walnut. so march 2007 i had my first brain surgury which would remove what was "safe" of the tumor because its was near my memory and speech part of the brain. so after surgury, i did 5 sessions of stereotactic radiation 45 min a session, mon/wed/fri/mon/wed, and then i was put on temodar or oral chemotherapy. recent scans showed that the oral chemo wasn't working, the tumor was growing, and i also had six more smaller tumors on another part of my brain. so in september 2007, i had another brain surgury to remove all the tumor, and at the the same time they implanted a balloon into my head that they filled with radioactive isotope to kill all of it. then i had one more session of radiation that would get all six spots at one seeing as though they were too small to operate on. so last week i had the last radiation, and had the balloon removed. 7 of the 20 staples were taken out when the balloon was removed and the rest are coming out tuesday. but now my doctor tells me that i cant do anymore oral chemotherapy, and he wants to do a thing called IL-2 or hi-dose interleukin. so now i am planning on doing this interleukin stuff in about 10 days. so this is where i stand with my fight with cancer. on top of my cancer im still trying to recover from my broken legs, but i guess i would have never found the tumor had i not crashed. but all i can say is stay positive, cancer feeds on weakness so live strong and be strong. ill keep you in my thoughts.

cancer mom · New User Joined: 17 Oct 2007 Posts: 4

My beautiful, healthy-looking 42 year old daughter has just entered stage IV after an initial stage I mole was removed in Jan. We are almost in shock at how quickly this is moving.

4 months ago her PET scan showed nothing, now she has upwards of 20 tumors throughout her body. She is currently awaiting an appointment w/ her oncologist (a week away) when she will need to decide whether to go with IL2 or try a study of Allovectin where there is a 2 out of 3 chance she will receive the Allovectin rather than another chemical that doesn't work so great...

We have been fortunate to find a dr. who has given her some hope rather than telling her to go home and get her affairs in order.

I don't know how we would cope if we didn't have the Lord to lean on...

I hope you get some small amount of comfort from the fact that you've had 14 years to live since your initail diagnosis...many don't get that.

You will be in our prayers. God bless you

brainman

sodapop, just a short message to check on how you are doing. Could you post an update for us? Thanks.
_________________
Jim
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
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

sodapop

Thanks for checking in, Brainman!

My last visit to the hospital was on Oct 4th and I posted about my results, it's on the first page.

I go back next Wednesday for another dose of Chemo--Paclitaxel/Carboplatin, and probably a well needed blood transfusion.

As of today, I feel great and my breathing is really good, which is awesome because before I started Chemo 6-7 months ago it wasn't so good. My Dr. wants to get in 12 doses, of which I've had 8 and originally he said 5-6 doses because it usually plateaus by then in most I guess. I feel lucky that it's still working and each scan shows shrinkage in the tumours.

If and when I reach the 12th dose, he wants to continue with the scans every 6 weeks I think and take it from there. If they start growing back, then it's either a clinical trial that he will reccommend or the chemo again. I wish I knew but I don't.

Thanks for all the prayers everybody, it's working. Laughing

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Can miracles happen?

http://cancerforums.net/viewtopic.php?t=7254

Sodapop--aka "the survivor"!

brainman

Sodapop, I just replied to your post on the complementary and alternative medicine forum and wanted to say more about your case but did not was to dilute that topic with unrelated communication.

I really do love your attitude... you are a survivor doing everything possible to be with us for a long time. I have read most of your replies to others and think you are a very caring person. Good to see you reaching out beyond yourself to help others.
_________________
Jim
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
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

sodapop

Update:

I went in for my next dose of Chemo on Wednesday and met with my Dr. My Blood Platelets were to low, so I have to go back next week for my treatment. They were at 50. I did get a blood transfusion to raise my red blood cell levels, which were at 7. I feel so much better now that I had my transfusion.

My Dr. wants me to go visit the NCI in Bethesda, MD, about entering a trial. He feels this is the best place for melanoma trials and feels that I'm a great candidate for them. He sent the referral and they already got back to him about my participation. They want a fresh MRI and some special blood work so they can determine the best course of treatment for me. My Dr. said that they are pretty excited about my participation and so am I.

I will still get my next dose of Chemo next week, but not sure if i will get more after that. I guess it depends on how fast the NCI gets me in for my initial consultation. My Dr. already sent over my records and they will be waiting for my MRI and Blood work.

I'm excited to see what they have for me. I still feel great and still have a very positive attitude.

I'm going to beat this, and God knows it. This is my next phase of the fight.

I will keep you updated with this next phase.

Thanks,
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Can miracles happen?

http://cancerforums.net/viewtopic.php?t=7254

Sodapop--aka "the survivor"!

sodapop

Waiting to hear what's next kind of sucks, but I am really excited about meeting the staff at the NCI in Bethesda, MD. They seem excited to get me in there, according to my Oncologist.

After reviewing the website and looking over all the trials they have going on there, I am even more excited. One reason for the excitement is that a lot of the trials are phase II and III involving treating your own White Blood Cells in the lab to make them into killer T-Cells followed by 7 days of 2 forms of chemo, then High Dose Aldesleukin after the injection of your treated cells. Even though straight Aldesleukin didn't work on me before, this is actually a eligibility criteria for getting in some of these trials--for people previously treated with Aldesleukin (IL-2) that had no effect before.

Some people have had complete disappearance of significant metastasis in the lungs liver and brain, due to these trials and still are completely clear 1 year later. This is very promising to me.

They have some other trials but most revolve around this same concept of treating your own cells in the lab, then injecting them back in to help the Aldesleukin to do it's work, along with the Chemo's and some have a GP 100 peptide vaccine or something injection as well, whatever that is, lol!

Sorry for babbling, but I really think I can benefit from this stuff and I trust my oncologists decision to refer me to these people.

I look forward to my visit to the NCI, hopefully soon.

Chemo's used

1. Cyclophosphamide
2. Fludarabine

Anyone have experience with these two types?

Thanks,
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Can miracles happen?

http://cancerforums.net/viewtopic.php?t=7254

Sodapop--aka "the survivor"!

northcalimomma · New User Joined: 04 Nov 2007 Posts: 8

Wow Sodapop your story gave me chills you are such a strong person. I will definitely be praying for you Smile

sodapop

Thanks, I appreciate it. Yeah, my story sends chills down everybodies spine i bet Smile

!

Let me create some more chills:

My last MRI came back with some new lesions. They are really small, 3 of them, but still are a concern and need to be taken care of. The Gamma Knife would have been used but 1 of the new ones is flat like a pancake i guess, which means the Gamma isn't the way to go.

So, I will be getting Whole Freakin Brain Radiation Treatment. 2 weeks, 10 treatments. I am scared but what can you do. My trip to the NCI for clinical trials will be put on hold until we get this under control, which my Dr. seems to think it should really do the trick since I responded so well to the Gamma Knife about 7 mths ago. Once I complete the 2 weeks of WBRT, we wait 4 weeks, do a scan and go from there, while keeping of my every 3 wks of chemo routine.

Can anybody shed some light on this WBRT? I know a little but would like some input asap.

Brainman, are you familiar at all? All others as well Very Happy

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Can miracles happen?

http://cancerforums.net/viewtopic.php?t=7254

Sodapop--aka "the survivor"!

brainman

Sodapop, aka "the survivor" Smile

, I have no personal experience with WBRT but I do know some things about it. First, it is kind of a misnomer unless you really have a lot of spots and they are far apart. As long as there are only a few and they are in the same general area, the will place lead around the non affected areas and even shoot the radiation at an angle to only irradiate the tumors.

After the treatments are completed, why do you have to wait? Because the radiation still is killing the cancer cells. Sometimes this residual effect works for up to 6 weeks after you get the final treatment.

It is still too bad that they cannot use the Gamma Knife. I have never heard of a tumor being too thin for the use of it. I have heard of a tumor being too large for its use.

I hope you get to the NCI trials soon and that it works for you Smile

. Please, keep us informed. I assume this is a phase III trial??
_________________
Jim
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
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

sodapop

Thanks, man, I really appreciate the response.

About the thinness of the tumor, I think the word he used was difused, as opposed to focal. Maybe it was the other way around, lol! I don't know, to much happened today. He explained it to me like it was pancake like. But he said they are all very small and we caught them early, but Gamma wouldn't be the way to go.

The 3 new lesions, 2 of them are on the right lobe next to each other and the pancake one is on the top of the brain.

There is no specific trial picked for me yet, I don't think, but I hope it's a phase III, or defintitely not a phase I I hope. I've read thru the trials available on the website for my situation and they all seem to be either phase II or III.

I feel very lucky to have the DR. I have, he's the Chief of Oncology/Hematology at the UVA and the Radiation Oncologists who I will talk with tomorrow is the Chief of that division. I feel so confident in these people, especially my oncologists, I wouldn't trade him in for any amount of money.

I will keep you updated.
_________________
Can miracles happen?

http://cancerforums.net/viewtopic.php?t=7254

Sodapop--aka "the survivor"!

brainman

They might be able to irradiate only half of your brain or maybe even less if they can find the correct angle that will get all 3 tumors without having to do the whole brain. Some times, they will give a patient two different positions: in your case, one position for the two tumors that are close together and a second position for the flat one.

Yes, stay away for Phase I trials. Those are for people who are really desperate and have no other choice... or just like to take risks.
_________________
Jim
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
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

sodapop

Thanks again.

It looks like I've been upgraded to a regular member now, sweet!

Actually, I don't know if they're are next to each other but the 2 aliens are on the right side anyway, sorry about that, and the other is on top--mr. pancake alien--! Evil or Very Mad

I want these aliens out of me.

Updates will be coming.

Very Happy

_________________
Can miracles happen?

http://cancerforums.net/viewtopic.php?t=7254

Sodapop--aka "the survivor"!

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