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Joan's proton therapy is completed


#1

Hi everyone,

Joan completed her therapy Wed night last week. I drove to Chicago to go to her last three visits with her. I was impressed with the hominess of the treatment center and how the staff celebrated the patients 'graduation' with a party atmosphere. the staff wears party hats and blows horns and ring cowbells, and the families bring food to celebrate with the other patients. On Tues Joan arranged for the staff to introduce me to how they develope her treatment plan. I saw her insides in 3D and spent 30 minutes being briefed on how proton therapy works especially for lung patients. it was very space age and facinating. Each day I could tell Joan was more excited about ending the treatments. When she came in the previous weekend her chest still looked like sunburn, now it looks like a very bad burn, and is blistering. she cannot have clothing touch it. We went to dinner Tues night after treatment and then to Trader Joes to get wine and NO-Pudge brownies for her party on Wed. Wed after her treatment the staff cheered her with cowbells and horns. she gave them all a bottle of wine for their compassion and care during her treatments. she got a certificate and a challenge coin for 'gradutation' from proton therapy. I took pictures with the staff and her doctor. Then we went to the Signature Club in the John Hancock building for dinner. She was exhausted, but very upbeat. She has continued to work as special ed teacher during her treatments. I sat in on her classes Thurs before I left to drive back to STL. Those kids love her. So she called tonight and said skin is blistering off now. She can put the lotion and bath on it more often now that treatments are over, because during treatment it could not be on there before the treatments. She is really hoping this will not scar, but hoping more, this will be the end of treatments. She is still very upbeat and smiling. God Bless her attitude.

if anyone has any questions about proton therapy for lung cancer, I belive we can answer them for you now that Joan has completed her treatments.


#2

Is Joan now done with all treatments?


#3

yes, all they reccommended was 30 proton treatments. no chemo. she has a followup appt next month with the proton group. currently her chest is blistered and pealing like a very bad burn.


#4

The skin should eventually heal. I don't know what's the best cream to use in the meantime. I was given a vitamin A + vitamin D ointment from Fougera to apply twice a day on the irradiated skin. The radiation I had was IMRT not proton (probably less aggressive).


#5

thanks for the suggestion, they gave her ointment and a powder she dissolves in water and applies to the area with either a gauze pad or wash cloth. the skin has now peeled off, and she said the pain is gone but it still itches.

it sure is amazing how they do the proton therapy and avoid other organs etc. so spaceage. let's just pray this is it.

Joan's mom


#6

Hi everyone

Joan went back to the pulmonologist for test. They gave her four hits on the inhaler before the test and it always makes her very jittery. Not sure if that is just normal or because of no thyroid. she called me between tests. She had wanted to make a trip to Tibet this summer, but due to the altitude the doctor said NO at this time. He said there is a lot of scaring on her lung from the proton treatments. The next test I'm sure was an MRI or petscan..she has not said how that went. But her mood remains extremely upbeat. she was coughing a lot again, but could have been from the lung capacity test. I will see her the 13th-15th and will let you all know more when I get back.


#7

Do you know if proton therapy can induce lung disease as does other forms of radiation therapy? Like fibrosis or pneumonitis:

http://radiopaedia.org/articles/radiation-induced-lung-disease

Pneumonitis does cause coughing...


#8

Update on Joan

She came in town as a surprise Wed afternoon so we had a wonderful dinner Wed night and great day at the botanical gardens in St. Louis Thurs. Her pulmonologist called while we were out Thursday and said the 'team' discussed her case Wed and his tests that he had just run, she is still coughing quite a bit. it seems to come in spurts it's not constant. So the team has decided not to introduce steroids just yet. She told him she gets out of breath doing certain things. Today after breakfast he called to tell her the team discussed her again and they have decided to run some additional test to rule out things before they procede with steroids. She will be giving blood, taking an exray to check for blood clot in lung from radiation, checking for pnuemonia, and doing an endurance test. She also has to have another thryroid cancer image done on her neck next week. She said he also mentioned it could be allergies or asthma, she says she can tell she is wheezing. I'm glad she came in as she was more forthcoming with how things are going than when she calls me on the phone. Her chest is still discolored like a suntan in a strange pattern. But there is no peeling or blistering anymore. I will be in Chicago with her next week so I will update you then after her testing. Thanks for your thoughts and prayers, please know I keep you all and your loved ones in my thoughts and prayers.

Joan's MOM


#9

So Elodie,

she finally admitted she does have pneumonitis. She at first told me they ruled out heart damage and blood clots and pnuemonia from radiation and said the coughing is due to scar tissue. they put her on steroids but she said that is not helping that she can tell. yesterday she called to tell me she has broken a rib from coughing. then she finally admitted that they said it is pneumonitis. I told her that's why I keep asking because of information I have found on this site. She mainly follows Imerman Angels since she has been with them because of her thyroid cancer. She still has her goofy personality and finds humor with her issues. She told my sister in law last weekend she would rather have another surgery than take the steroids. I find that very hard to believe, she must have forgotten how miserable she was!

Joan's MOM

Elodie Espesset said:

Do you know if proton therapy can induce lung disease as does other forms of radiation therapy? Like fibrosis or pneumonitis:

http://radiopaedia.org/articles/radiation-induced-lung-disease

Pneumonitis does cause coughing...


#10

I can understand she doesn't like to take steroids. They can have bad side effects like preventing you from sleeping. There's a chance the pneumonitis will resolve by itself and not progress into something worse. I hope she gets better with time! Good that she still has her sense of humor...