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Radiation starts Valentines Day

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

I had a consult with the head of the thoracic radiation department on January 21. I REALLY liked him. He was thorough and confident yet, very down to earth. He has treated many mesothelioma patients with IMRT radiation to the pleura. He is cautiously optimistic that I will have a good response. It will be 30 treatments over 6 weeks; 45 minutes in duration.
It does not come without risk, collateral damage or side effects. All of which are individual based. He spelled out the worse case scenario and said we will hope that I am on the less side of possibility. Nausea, vomiting, fatigue, low blood count, coughing, 40% reduction in lung function, esophageal burning, and damage to upper portion of my heart (this would probably not be an issue for 10 years). I went for my simulation February 1 and had my cast made, tatooting and cat scan for planning. I had some questions for Dr. Stevens and his PA, Belinda called him to come talk to me. He spent about 30 unscheduled minutes with me and I left feeling blessed that this treatment is an option for me. They called today and said I am scheduled for my first treatment Monday @ 5:30 pm.

I am filled with a sense of eagerness and dread all at the same time. I know you all can relate. I CAN do this. There should be no burning of the skin, thank God. I am going to DVR a lot of TV shows and stock the fridge with lots of fluids this time to avoid dehydration.

On another note, my hair is about 2 inches long and has come back ridiculously curly and pewter colored. It is taking some getting used to, but I am glad to have it.

Wonder if they will give me a box of chocolates Monday when I finish treatment? :)

A big ((Hug)) to you all,
Joanne

mp327's picture
mp327
Posts: 2939
Joined: Jan 2010

I think they should give you a box of the finest chocolates on Monday! lol! Thank you for updating us. While I know you are not looking forward to going through this, you have such a great attitude, which will help you keep moving forward with each and every day. My hope and prayer for you is for minimal side effects and great response to the treatment. Your doc and his staff sound like gems, so you are in good hands. I will certainly be thinking of you on that day and keeping you in my prayers.

As for the hair, there are NO bad hair days anymore! I'm sure you look great!

Hugs--
Martha

duckyann
Posts: 162
Joined: Jun 2009

Hi Joanne,

Wishing you the best and minimal side effects through your treatments. I also think that they should give you the best chocolates! I will be thinking and praying for you daily.

Take care
Nancy

SueRelays
Posts: 489
Joined: Dec 2009

BIG HUGS back at ya Joanne!
So weird how our changes.....but I'm sure you look great!!!
I would say a box of chocolates and a bottle of red....but that's just me :)
Will be thinking and prayin for ya!!

z's picture
z
Posts: 1257
Joined: May 2009

Hi Joanne, I have been thinking about you alot, and was hoping to see a post from you about what the next step is. I am so happy there are options for treating the pleura. I know I have read about the talc procedure for malignant pleura, something about the talc causing the malignant cells to die. I'm sure your drs will be giving you the best treatment for the condition thats available. Please keep us updated and let us know how your feeling good or bad, and I want you to feel good. Sending you positive thoughts and prayers. Lori

Gulamin
Posts: 132
Joined: Dec 2010

and lots of chocolate. Wishing you all the best!! Elke

sissy310
Posts: 300
Joined: May 2010

Hi Joanne - been wondering what you were up to and thinking about you. Glad to hear of the update and of your treatments beginning - well - today! Hope that this is a good boding that it started on valentines day, a day of love, a day of hope. Keep us posted, please and if you need a virutal hug or an ear to listen...you know we are all here for you. Hugs, Marilyne

sissy310
Posts: 300
Joined: May 2010

P.S. You hair came back curly? I admit I am jealous...I had wavy hair before, now it is straight and harder to manage, mostly the same pewter color as yours on the front edges and the rest is almost a dark black intertwined. I'm trying to figure out if I like it or not or if I want to dye it again. Right now I'm enjoying the freedom from L'oreal. Keep us posted, keep your great attitude and your faith. Talk to you soon. Hugs, Marilyne

sissy310
Posts: 300
Joined: May 2010

P.S. You hair came back curly? I admit I am jealous...I had wavy hair before, now it is straight and harder to manage, mostly the same pewter color as yours on the front edges and the rest is almost a dark black intertwined. I'm trying to figure out if I like it or not or if I want to dye it again. Right now I'm enjoying the freedom from L'oreal. Keep us posted, keep your great attitude and your faith. Talk to you soon. Hugs, Marilyne

sissy310
Posts: 300
Joined: May 2010

P.S. You hair came back curly? I admit I am jealous...I had wavy hair before, now it is straight and harder to manage, mostly the same pewter color as yours on the front edges and the rest is almost a dark black intertwined. I'm trying to figure out if I like it or not or if I want to dye it again. Right now I'm enjoying the freedom from L'oreal. Keep us posted, keep your great attitude and your faith. Talk to you soon. Hugs, Marilyne

Sundanceh's picture
Sundanceh
Posts: 4297
Joined: Jun 2009

We've talked about this before. A couple of things I wanted to relay to you:

30-treatments are gonna' make you so sick and tired - like you've never felt before in your life. When I got to #27, the life was literally nearly drained out of me - if I had not gotten a 4 day break around Thanksgiving, I would have probably been in a wheelchair to get to the treatment area, I was that sick.

Keep in mind also, that you will feel very fatigued for 30-45 days AFTER you have finished treatment. And many, many months of heavy inflammation inside your lung...healing will take awhile, so just go slow.

There WILL BE burning of the skin, just to let you know. These rad docs think they know everything, but the funny thing, they've NEVER done treatment. They sugar coat it and shade the truth, and I just hate that. Let's get real.

What you can do for the burn is to get an RX for PRU-TECT....it's a cream than can be rubbed on to help that for you.

You should start to see the change in yourself right about Week #3, treatment 15....from there you will just get more tired and this will continue. So right now, just cross off the next 10-weeks for the treatment and partia recovery.

I did IMRT....I don't care what they call it, it is brutal and medieval and once it gets you down, it keeps you there. The good news is that treatments will stop and as the calendar changes day, in time all of this will be behind you.

None of us would elect for this if there were no other choice. I fought it for awhile and with my 3rd recurrece, the tumor was up against the spine and embedded into my rib cage and chest cavity - thus, I had no choice since we did not get clear margins.

You know me - just keepin' it real for you:)

I wish you all the best!

-Craig

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