Doctor's Appointment

I had an appointment with my LV oncologist today.  He spent quite a bit of time talking to me, explaining things, and trying to answer my questions.  He also went over my PET scan results from the 14th.  He didn't have the images, which I really wanted to see, but he tried to explain the written findings.

Questions and paraphrased answers

Are we sure that we are treating the right cancer?
We trust the findings of the pathologist.  They are the ones that determine the biopsy results.  All of the chemos that you have had this time Gemzar/Navelbine and the ICE treat a wide variety of cancers.  We have basically been dropping bombs on you...the new treatment (Adcetris) is more targeted.

Why haven't the chemos been working?  Why does my lymphoma look different this time? (Not sure if he exactly answered my second question but the answers related to each other.)
I can't tell you for sure why they aren't working.  But a few cells probably survived the ABVD from your first time with cancer.  Because they survived this effective chemo...they became stronger.  When they came out of lying around dormant they starting growing the new lymphoma.  It is stronger and more resistant to treatment.


What about treatment?
Brentuximab (Adcetris) was recently approved...I think just last year.  I haven't had to give it to any of my patients because they have had results with their chemo and Hodgkin's isn't that common....and usually ABVD works for people the first time.  It is a drug of the future.  It targets the cancer cells specifically.  The antibody that is attracted and attaches to the cancer cell is bonded with a chemo so the chemo goes right into the face of the cancer instead of floating around your whole body killing cancer cells along with good cells.  When a new drug comes out it starts out being used for people with few other options and gradually gets used earlier and earlier in treatment.  I had to talk with the head of your insurance because they weren't going to approve it...it was only supposed to be approved if you had failed remission after the stem cell transplant.  I told the guy that he had a chance to make a difference in your life and he approved it.  The goal is to get the cancer to respond to the treatment and then still send you on for the high dose chemo and transplant.  We are going to give you two treatments and then send you back for another scan.

What about the side effects? PML?
The side effects are like most chemos...lower blood counts, nausea, tiredness, numbness in the hands or feet.  There is nothing we can do for you to prevent or prepare for PML but it is a very rare side effect.   And if it happens it would mean I'm dead.  Well I wouldn't have said it quite like that.  I'm not sure if there is a treatment for PML.

What about my port?  If I'm not able to use it...I want it taken out.
I think that we can use it.  I would like to have them access it today for your treatment if you are ok with it.  Since your arm is no longer swollen it wouldn't appear that you still have a clot.  I think that we should use it.  Sometimes cancer patients blood gets thicker and is more likely to clot.  We are going to keep you on the Lovenox shots rather than Coumadin because it is easier to regulate for someone like you...going through treatment ...and if your counts get low and you need to stop it...you can stop it immediately whereas Coumadin is still in your system for a few days.

The PET results
"new enlarged gastrohepatic, left paraortic and aortocaval lymph nodes, as well as mild uptake in a new left sub pectoralis node, as detailed above, suggestive of progression of malignant disease."  This is all new growth since the PET scan from April 24th.


After speaking with the doctor I decided to go ahead with the treatment they had planned for me to have.  They accessed my port fine and I received my premeds (anti-nausea and Benadryl) and my first dose of Adcetris.  The whole infusion with premeds and Adcetris took about an hour...not very long at all.  I am scheduled for my second treatment on July 17th.

Adcetris® Lawsuit

This is a link to a lawsuit against Adcetris, the drug that the UCLA doctor recommended to be the next treatment.  Although there have only been these three reported PML cases...I guess it may not be common, but PML sounds horrific.  These are the things that patients have to deal with...what are the risks and side effects?  Is it going to be worth it in the long run?  Am I going to live...or is the treatment or the disease going to kill me?
Adcetris® PML Brain Infection Lawyer & Lawsuit | The Senators (Ret.) Firm, LLP

New Plan???

So....I didn't get the news I was hoping for.  It appears that there has either been no change in the cancer or that it is still growing...either way, it's not good.  The UCLA doc said that our next option, what she would suggest, is starting the drug Adcetris.  It is a new drug, just approved last year for the treatment of Hodgkin's.  It isn't chemo; it is an antibody-drug conjugate.  It sounds promising...I guess...but I would like to do a little more research on it.

It is just so frustrating!!! I don't understand how this cancer isn't dead...I don't feel bad at all.  I feel fine...why is it still growing??  Neither the cancer nor the chemotherapy have made me feel very bad.  I still feel, for the most part, healthy and strong.  What is going on? 

Part of me thinks that God is putting me through some test to see how strong my faith is.  This part of me wants to stop treatment and just give it to God.  I know that He alone has the power to cure me.  Maybe He wants me to show that He can perform miracles where no one or nothing else can receive the credit.  I don't want you to think that this means I am giving up the fight...that I don't want to live...because I'm not and I do!!  I just feel like I have already tried the...medicine way...maybe it is time to try something else.  Or maybe God wants me to use this new drug.  Maybe this is part of His plan.  I am a little confused right now.  I don't want to just keep going along with what the doctors say just because they say it...Please pray for me to receive God's guidance.

What's Next?

I had another ICE chemo the last weekend in May. It went fine, and I did fine with it.

 I am headed to LA again on June 14th.  I will be having a PET scan that will hopefully show that this cancer is dead!  After my doctor gets the results she will go over what the plan of action is going to be.  If my scan is good then I could be going for the high dose chemo and transplant as early as the following week. 

Although part of me really doesn't want to do it...I'm kind of dreading it...the other part of me can't wait to get it over with so I can get on with my life. 

Please pray that the results of the PET scan are good and that I can go forward with the next phase of my treatment.

Going Bald

Since my hair had been making a mess all over the house I asked my husband to just shave what was left off.  He wanted to make sure I really wanted to and that I wasn't just doing it to be crazy. :)  So on May 19th or 20th, we did it.  I wasn't sure how I would feel....but my sweet husband encouraged me and made me still feel attractive.  He said, "Just look at yourself...it doesn't look bad at all...I kind of like it."  And I looked in the mirror...and it wasn't that bad.  My head actually isn't a bad shape but it sure is white. :)  My husband was like, "Dang your head is white."  But I have always, since I was a born, had hair on my head...of course it is white. I was kind of nervous on how the girls would react to it so I went down with a scarf on my head.  My oldest wanted to know why I had that on my head so I told her that the rest of my hair was gone...Mama doesn't have hair anymore.  She of course wanted to see...so I took of my scarf and showed her my head and told her, "Feel it, it feels funny".  So, she rubbed my head and laughed, then the youngest followed her big sister and did the same.  They handled it so much better than I could have hoped for. 

I got some hats and scarves to cover my head, but after I had been bald for a few days, I just started leaving the coverings off at home.  I feel much more comfortable without something on my head.  Of course I put something on my head when I go out...and now I can't really walk around without people knowing something is wrong.  When I had my hair still, no one could tell I was sick...without it...there is no denying it.  I tried on my wig...and it just looked wrong...and the girls didn't like it.  The oldest said, "What's that hair on you?" :)  I recently had the bangs trimmed which helped a lot.  It looks better and more natural now, but...it just isn't my hair.  Maybe I am just not a wig person...

My husband said I should get a tattoo on my head and then when my hair grows back in...no one will even know it is there. I think that would be entirely too painful...and I really wouldn't want to spend money on a tattoo that would be covered up with my hair...that no one, not even I would be able to see. ;)

I must say there are some nice things about going bald...  Showers are much faster and I don't have to spend time blow-drying my hair.  I am much cooler outside in this summer heat.  I can stand in a wind and there isn't any annoying hair blowing in my face.  And the rest of my body too...my legs stay smooth for days after shaving whereas before it was only hours.  I only shave my underarms maybe once a week instead of daily.  Of course I would rather not have cancer, be going through chemo, and have lost my hair...but I might as well enjoy the benefits while I can.

The two top pictures are right before my husband shaved my head. (I should have put some makeup on..kind of scary picture.)  And the bottom is my glamour bald shot. :) It is weird but these pictures capture how I felt...I felt more sick looking balding than bald.