Dx'd in FL MS & Cancer

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Kyborn07
New Member


Date Joined Feb 2007
Total Posts : 4
   Posted 2/1/2007 8:43 AM (GMT -6)   
Well it took awhile to be dx'd - as I am also a cancer patient (advanced melanoma Stage IIIC).  My doctors at MD Anderson (MDA) thought my cancer had spread to my lungs and brian.  I had lesions show in both at the same time.  The MRI's from MDA kept saying Flairs, white matter... the report would always say MS - until the lesions showed in the brain.  As recommended by my doctors there I went to 4 Nuero and 1 MS specialist at Mayo that barely gave a glance at my films or reports and all said I did not have MS. What made my cancer doctors believe the cancer had spread to my brain was the fact the lesions were round.  My curent (new) lesions are rectangle/oblong.  On my most recent MRI they called in somebody special and it was confirmed it is MS.  Of course to help validate this is the fact the right side of my face has been numb since Novemeber.  I also have on the MRI report two areas they have titled "black holes".  Anybody else have "black holes"?
 
Those black holes showed up in my early 30's -so we are guessing at this time, that is when this disease began to show itself.  I have had 3 spinal taps and have high levels of protein and I have bands (whatever they are).
 
Now I have to find an MS doctor.  The trick will be treatment.  Most MS treatment feeds my type of cancer.  My cancer doctors are talking about Interferon-beta.  Makes me more than a little nervous as I took Interferon-alpha for a year for my cancer.  Was a horrible time due to many side effects.  My cancer doctor said it is VITAL he speak with the MS doctor about any treatment other than Interferon-beta.
 
So, here I am.  New member of this on-line family. I am looking forward to being an active member of this community and becoming friends with as many of you as possible.  So...anybody do Interferon-beta? How often? How much?  Side effects?  and does anybody else have "black holes".
 
*Hugs* to all

shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 2/1/2007 9:04 AM (GMT -6)   
Welcome!  My, you have been through the ringer.  As I can recall (with this ms brain of mine), black holes are areas that were lesions at one time but now they are dead areas that will never resolve.  one of the goals of treatment is to reduce or prevent new lesions so they don't become black holes.
 
I am on Avonex and there are many others on Beta seron and Copaxone (the only non-interferon).  It is good your cancer doc is staying in close contact with the ms doc...that is vital.  There are other treatments like tysabri and also oral chemo drugs they give in conjuction with one of the injectables if neccessary.
 
The national ms society website has info. on all the treatments available, alos your local chapter can send you info.
A quick info.
Copaxone everyday sub-q
Rebif 3 x week sub q
Avonex 1x week in the muscle
Beta seron every other day sub q
Tysabri i.v. 1x month
Take care and feel free to post and ask questions!
Michelle ><>
Co-Moderator MS forum
 
Happiness is not a destination but a day-to-day journey..


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 2/1/2007 9:25 AM (GMT -6)   
I'm so sorry you have so much to deal with! Yes, the black holes are pretty common with those of us who have had MS for a long time. You really do need to make sure you've got all your doctors talking with each other over a medical plan for you. Take care, and come back and let us know what they (the doctors) have decided on, for your course of treatment, and then we'll see if we can be helpful.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kyborn07
New Member


Date Joined Feb 2007
Total Posts : 4
   Posted 2/1/2007 9:26 AM (GMT -6)   
Michelle, When you listed Beta seron is that the same as Interferon-beta (just a name that is given in the MS community). Thanks for the info, I've been checking out their site as well. I'm looking forward to visiting the chat room this evening.
Debi
 
You learn something positive from EVERY situation in life.  Even if the only positive you come away with is : Not to do that again.


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 2/1/2007 10:30 AM (GMT -6)   
Hey Debi

Welcome to the family! I just love that u phrased it that way for we are in fact an online family who really takes care of each other the best we're able to. I'm so glad u found us and have posted. I"m so sorry for the cancer and ms, boy, double whammy. How are u getting on with the cancer? U certainly have been thru a lot to find u'r dx and now this with the med. I"m not dx'd so don't have any experience with the meds, but u'll find many here who are experienced as well as educated and can give u much good advice and support. Please ask all the questions u want and we'll do all we can to answer them for u. To add, we have live chat on Monday's at 6:00pm (cst). I hope u can join us and allow us to all get to know u better as well as maybe provide some real time answers to u'r questions.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


tropical dreams
Regular Member


Date Joined Sep 2006
Total Posts : 76
   Posted 2/1/2007 11:15 AM (GMT -6)   
Welcome my friend,

So sorry you are going through this double whammy. I take Betaseron, started in Aug 06, injections are every other day. Some side affects are flu like symptoms so I inject before bedtime to sleep through any of the side affects. To find out more about betaseron there is a web site www.betaseron.com that has lots of info that you might want to check out.

Please let us know how you are doing.

Double hugs to you!
***Carla***
 
EVERY DAY I WAKE IS A NEW POSITIVE BEGINNING
 
Dx 08/02/06 MS
Betaseron
Citalopram
Gabapentin


tropical dreams
Regular Member


Date Joined Sep 2006
Total Posts : 76
   Posted 2/1/2007 11:32 AM (GMT -6)   
Hey where are you in FL? I live in FL.

Carla
***Carla***
 
EVERY DAY I WAKE IS A NEW POSITIVE BEGINNING
 
Dx 08/02/06 MS
Betaseron
Citalopram
Gabapentin


Kyborn07
New Member


Date Joined Feb 2007
Total Posts : 4
   Posted 2/1/2007 11:40 AM (GMT -6)   
I'm in the Panama City area - in the Panhandle - where are you?
Debi
 
You learn something positive from EVERY situation in life.  Even if the only positive you come away with is : Not to do that again.


tropical dreams
Regular Member


Date Joined Sep 2006
Total Posts : 76
   Posted 2/1/2007 4:53 PM (GMT -6)   
Hey Debi,

I am in New Port Richey. Maybe we can meet someday?

Carla
***Carla***
 
EVERY DAY I WAKE IS A NEW POSITIVE BEGINNING
 
Dx 08/02/06 MS
Betaseron
Citalopram
Gabapentin


Kyborn07
New Member


Date Joined Feb 2007
Total Posts : 4
   Posted 2/1/2007 5:05 PM (GMT -6)   
That would be nice. We go to the Orlando area a few times a year. Husband's sister lives there. I go if I'm not having to much back and leg pain - the trip is only like 5 1/2 hours but wears me totally out.
Debi
 
You learn something positive from EVERY situation in life.  Even if the only positive you come away with is : Not to do that again.

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