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.

Last chemo...

Well, today was the last chemo of the Gemzar and Navelbine that I will receive.  I never really thought that it would be bittersweet to end chemo but it really was.  I was hoping that my INR level would be high enough so that I could stop the Lovenox shots, but unfortunately it wasn't.  So, since I start my Neupogen injections tomorrow and still have to take my Lovenox, I will be getting 4 shots a day, 2 of each.  And my poor husband has to give them all to me since I'm a chicken.  :)  My stomach is running out of places to poke so he might have to use my thighs and upper arms.  I am getting my INR tested again on Thursday...please let it be high enough!! 
Yesterday my husband and I flew to LA to meet with the doctor and transplant coordinator.  It was a very long day.  We flew out at 8:30am and got to UCLA earlier than needed.  We just sat around waiting for the coordinator to meet with us.  Before she came over to meet with us she called and asked me if I would be able to squeeze in a PET scan while I was there.  I knew that I wouldn't have time with our return flight being at 5:30 so I called the airline to see how much they would charge to switch to a later flight.  When they said, "No charge" I went ahead and changed our flights to 7:45.  Later, after we had been talking with her for awhile we found out that I wouldn't be able to get the PET scan anyway because one of their machines was down...we changed our tickets for nothing.  I also found out that they won't be able to use my port for my high dose chemo/SCT.  They need something called a double lumen so I will have to have something temporary inserted for my stay there.  So that means....I didn't need this port! The Gemzar/Navelbine could have just gone in an IV, it gave me another scar and it most likely caused my blood clot...and I didn't even need it... :( Oh well...it's already done.

So...it is a clot...???

I spent Monday making phone calls to make sure that my doctors were aware of my ER visit...I didn't want to get looked over...I wanted to make sure someone was going to do something.  I left I message with my Las Vegas oncologist, then I even left a message for my UCLA oncologist and emailed my UCLA transplant coordinator.  My UCLA oncologist called me, I was amazed...and she let me know that her fear was that if the mass was putting pressure on the vein, then it was growing.  She said she had spoken to LV oncologist and he was looking into it.  And I sent her office a copy of the CT scan just in case.  Then my LV oncologist's office called to schedule my appointment for the morning of Wednesday the 4th.

Since my ER visit my body and emotions have been through many changes.  Over the weekend the swelling started moving into my neck and underarm area as well, creating some extra soreness and sensitive spots.  This of course freaked me out.  I wasn't sure if I should go back to the ER...I ended up just staying home and trying to rest it and still keep it elevated.  My arm is keeping a good color most of the time.  The veins in my chest and upper left arm are more visible.  It is still swollen and sore but doesn't seems to be bothering me quite as much.  Maybe I have just adjusted to it.

This morning I went to my appointment with the oncologist.  He said that he had the radiologist compare Friday's scan to my scan from October and that the mass in my chest had shrunk, not grown. (YAY!) He said the radiologist description on Friday didn't make much sense because if the mass was pressing on that vein, the Superior Vena Cava, my whole upper body would be swollen, not just one side.  He said looking at me, one swollen arm and the veins being more noticeable made him believe it was a clot.  He said that they could do a dye study to see how the blood was flowing but he wanted to start me on medication right away.  Then he sent me to see a surgeon that he consulted with.  The surgeon explained a little more to me about the blood flow, where my port is positioned, and where they think the clot is.  They think the clot is...kind of...behind my collarbone.  He said this is a difficult area to see with the ultrasound and even the CT scan.  He also told me he could move my port...no thanks, I don't want any more surgeries.  He told me things he could do and basically said he hopes he doesn't have to; that hopefully the problem will be solved.

So, now I have a blood clot and I am having to take two shots of Lovenox in my stomach everyday until my other medication, Coumadin, builds up in my system.  I have to go to a Coumadin clinic Friday to have my levels check in case they need to adjust them.  So...hopefully this will take away the clot and swelling. :)

Thrombosis??

People should probably not be allowed to google their symptoms when they are feeling nervous about them.  Since Friday afternoon I have had pain in my left shoulder and my port has felt very sensitive.  Yesterday I discovered that I have a low grade fever, which I still have.  And today my hands and arms just don't feel quite right...they feel weak...tingly maybe...kind of hard to explain.  So, I googled my symptoms and it brought up thrombosis, which is a blood clot restricting the flow of blood.  Apparently they are common in people with ports...   I put in a call to the doctor and hopefully they will get back to me soon...I am really trying not to overreact.

3rd Cycle Done!

I haven't written in a while...I guess everything kind of becomes a routine and I don't want to bore the people who actually read this. :)  I go to chemo and come home.

Friday was the last chemo of my third cycle.  I have this Friday off and on Monday, the 5th, I am off to LA again.  I will be doing pulmonary testing along with another echo cardiogram, an EKG, a chest x-ray, and a lot of labs.  My coordinator said they would take about 8 tubes for different blood testing that they will do.  I hope I don't pass out. :)  This should take care of all my pre-testing.  The only other thing that I need to do is get an oral exam from a dentist to ensure that my mouth is healthy.  After I pass all these tests I will get approved for the stem cell transplant. 

The closer I get to the transplant, the more anxious I become.  I just want to hurry up and get it over with.  I hope that my body is strong and does well with the chemo and transplant.  I hope that I don't have to stay in UCLA for any longer than I have to.  I need to start thinking of how I am going to handle things when I get home.  I know my Mom is going to stay with me for a while but she can't stay forever...and my husband is most likely going to deploy in June.  I am going to need help with cleaning and get someone to come clean out the cat box for sure.  I am hoping that I won't need any more help than that but I don't know yet. 

On another note, my oncologist said that it is OK for me to get a massage so I am getting one on Friday.  I can hardly wait.  I really need it.  Something is wrong with my left shoulder...maybe a pinched nerve or maybe just a really bad crick in the neck.  It is kind of irritating my port tubing and freaking me out a little bit.

First Chemo

Today was my first chemo and it went really well.  We started later than I thought we would because they went over my treatment and then had to wait for the lab to mix and deliver my chemo drugs.  Also, when the nurse attempted to access my port there was not a blood return, so she had to put something in there to open it up.  When I finally received my treatment, it went really fast.  I don't think it took two hours at all.  I did take a book with me to have something to do, but the nurse put the movie Zookeeper on, so I watched that while I was there.

When I got home I had to eat quickly and then go to my post-op appointment for my port, which was really quick.  He just looked at it and said it looked good.  I told him he did a beautiful job on my stitches, and he said, "I know." lol.  He really did do a fantastic job though. :)  Then I ran to the post office to get stamps to mail Christmas cards.  Finally, I made it back home to relax.  I haven't been nauseous though.  I feel really good so far... hope it stays this easy. 

Port scar picture

Took the bandage off today...  It looks pretty good...but if you notice the triangular shape...that is my new port.... it looks big...   :( owwww!

My newest war wound.  I think it looks slightly worse in person, but maybe not.  My neck and shoulder are a little stiff on this, my left, side.   The port feels like a piece of jewelery I am wearing under my skin... eww!!!  It is such a weird feeling.  I can feel the weight of it hanging there and the bulkiness pushing against my skin.  It is a little swollen now so it is hard to tell how large of a bump it will be, but it is definitely going to stick out more than the first one did.  The first one was placed lower, near the top of my breast and didn't end up sticking out much, if at all.  This one though they said is a little bigger and they placed it higher.  As you can probably tell, it is right under my collar bone.  It has a pretty nice bruise surrounding it, and...it is time to take a pain pill.