This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
 
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Chemo & More....

Let me just start by saying how much I love my Oncologist. He is sharp and caring to boot! He was very thorough....went over my medical history and some concerns he had in regards to some bloodwork that was done. And, of course we discussed my MS.

When I arrived at the appointment I was sent straight to the lab for some bloodwork. It was interesting to me that he had ordered a LDH seeing how this is a test that I get once a year to monitor the lymphoma I had.....or thought I had. It turns out that what I thought was resolved from the surgery I had removing the lymph node thus removing the malignant cells is not actually resolved. Sure those particular cells were removed through surgery, but I do have Indolent Lymphoma. Next he talked to me about my liver. My liver function is currently normal...that is good news (has been since I have come off the Avonex & oral steroids) but the CT that was done in July showed my liver was enlarged. I knew this....no biggy right? I figured this was because of the Avonex as well. After all, my GI doctor ran a whole slew of tests to make sure there was nothing else going on with my liver.....and everything was normal (so I was told). He tells me that yes, everything was normal but one of the tests uncovered that I carry a genetic marker found in a rare type of liver cancer (at least rare in this country). It is called Hepatocellular Carcinoma. This type of cancer is slow-growing and usually not diagnosed until later in life when it is too late to do anything.....once cirrhosis has kicked in. It does not usually have any symptoms until later in life and so it can be hard to treat, however if it is caught early then there are options. They can do surgery to remove the tumors and follow-up with chemo and/or radiation. Fortunately for me there is a good chance that I only carry the genetic marker for this and don't actually have the cancer. Not to mention that if I was to develop the cancer my Oncologist would be on top of it seeing how he is aware of my risk factor and I will be tested every so often.

After being somewhat overwhelmed by all of the information I was given we got into what I was really there for....treatment options for my MS. He talked to me about the Novantrone (a.k.a. Mitoxantrone) and told me that he was happy to write the orders and get me started. I am scheduled for tomorrow at 2pm. He talked to me about the risks, side effects, etc. and told me that there is a limit to the number of doses because of the fact it can be cardiotoxic. He then told me that he would be happy to see me every three months and although I would need to see my neurologist (of course this is a given) he would be happy to write orders for each treatment so that I don't have to do the treatments in Seattle and have to travel after having the treatment (just in case I do get sick). He also told me about another chemo drug, Cytoxan, that he has some MS patients on. He mentioned this would be a good option for me to transition to after the Novantrone. I was happy to hear that there are more options out there....and more coming everyday!

When I got home of course I looked up information on these cancers as my head was kind of spinning. It turns out that one of the treatments used for Indolent Lymphoma is Rituxan which has been in the news lately as one of the medications currently showing some positive results in treating MS. Also, Cytoxan...the chemo drug he mentioned I could try after finishing the Novantrone is a standard therapy for HCC. So, even though the appointment was not great news, at least I know I am in good hands! As a matter of fact....my oncologist even called me this morning to see how I was doing, if there was anything I needed, and to make sure that I was aware they called me in a RX for anti-nausea meds for after my chemo.

Well, I need to get going for now. He has me scheduled for a CT of my abdominal area today to check for any problems in the liver and spread of the lymphoma. The appointment is not until 1:20 but I have to start drinking a horrible chalky (tried to make it taste like berry) contrast drink. One now and another a 1/2 hour before the scan. Wish me luck!

I hope you are all doing well. Please take care of yourself.
Have a good Thursday!

Jaime (this is for you Matt!)

7 comments:

Linda D. said...

Geez, Jaime! You're gonna glow in the dark soon...but then again, that could be way cool now that I think of it! Good luck with your treatments and may I recommend Zofran for nausea? It's a miracle pill from heaven...

Linda D. in Seattle

Linda D. said...

Geez, Jaime! You're gonna glow in the dark soon...but then again, that could be way cool now that I think of it! Good luck with your treatments and may I recommend Zofran for nausea? It's a miracle pill from heaven...

Linda D. in Seattle

Anonymous said...

Damn woman, you got yourself one sharp guy there. Make sure to keep him on your case!

Jaime said...

Linda,
My doc gave me some IV anti-nausea meds before doing the chemo and then sent me home with Compazine. Anytime I seem to get a little sick I just take one and it seems to do the trick. Other than that I am just taking things easy.

Jaime said...

Mdmhvonpa,
You are right there. I am very greatful to have been referred to him. Talk about a blessing!

Suzy said...

Geeze girl...I'm feeling for you here! What a ton of stuff to have to deal with!

I've got Sjogren's Syndrome and they say Rituxan is a good drug for many things including MS. Maybe you could try a few infusions of that?

I wish you well and for better days ahead. You're in my thoughts!

Jaime said...

Thanks Suzy! I hope you are doing well. The thing with Rituxan is that it is still in the clinical trail phases...hopefully it will be soon though. :) My oncologist has some tricks up his sleeve for when I am done with the Novantrone so we will see.


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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