Hi..... GUESS WHAT? ........

I went to see my Onc today and got CT results. I have had radiation pneumonia in my right lung from Cyberknife for several weeks now. It appears that has gotten slightly worse. Onc said I needed to continue with steroids but by the time I finished the first round of them my chest was hurting so bad I thought I was having a heart attack. No way am I doing that again. So he said we would try a different kind of steroid. That is the only thing to help radiation pneumonia since it is not a bacterial infection. OK...I can go with that.

My biggest concern was the 4 spots in the lungs. One team of docs said it was pnemonia inflammation areas but my Onc said no way.. its cancer. Which was the main reason for the follow up CT scan. he said if spots decreased in size then it would definately indicate pneumonic activity. GUESS WHAT????? All spots decreased in size and 1 is even gone..YAY!...YAY!.... YAY!!! WBC count got up in the high range last week....way down this week...which shows a decrease in infection... yep..THAT's what I'm talkin bout!

CEA rise from 5.3 to 7.7.... normal rise attributed to inflammation. Onc said we should start to see decrease.

I have been having a horrible time with deeply embedded scabs in my sinus cavity. Raw areas that won't heal. ENT says it won't heal till I am off Avastin. Onc has taken me off Avastin till all that heals up.

I told my Onc I was really thinking about giving up chemo period....this is where he went physco.... I told him I wanted to get HEAVY into juicing, diet change...supplements...whatever.... he said he would lower my dose of maintenance chemo.... and for me to go ahead...have at it with the alternatives...build up that immune system...take whatever supplements I want..but PLEASE do not give up the chemo...use them together.... it has gotten me very far in my journey with manageable side effects... dang... I gave it some thought...Ya, I can roll with that...for now anyway.

Tomorrow is the start of major diet changes..MAJOR juicing.... ooops..better get them Chocolate covered strawberries eaten up today!!! I am so happy...so blessed...and so lucky to have you all to share this with....people that can related to how wonderful this news is...who know how I feel...Love you guys! Take care.

Jennie


P.S. To all those who answered my post about being so sleepy....you were right...the pneumonia IS a big factor...especially now that I know it got worse...thank you all for your comments on that.
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Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Wonderful news!
    Dear Jennie,

    So very happy for you...all this sounds great...even if you still have the pneumonia.

    Glad to that your onc agreed to your wanting to move to the supplements, juicing etc and that you are comfortable with a modified chemo plan.

    Keep up that fantastic recovery!

    Hugs,

    Marie who loves kitties
  • pepebcn
    pepebcn Member Posts: 6,331

    Wonderful news!
    Dear Jennie,

    So very happy for you...all this sounds great...even if you still have the pneumonia.

    Glad to that your onc agreed to your wanting to move to the supplements, juicing etc and that you are comfortable with a modified chemo plan.

    Keep up that fantastic recovery!

    Hugs,

    Marie who loves kitties

    I been thinking a lot about your lung, really! So it makes me
    happy to know it was just a false alarm! CONGRATULATIONS! Jennie !
    HUGS!
  • coloCan
    coloCan Member Posts: 1,944 Member

    Wonderful news!
    Dear Jennie,

    So very happy for you...all this sounds great...even if you still have the pneumonia.

    Glad to that your onc agreed to your wanting to move to the supplements, juicing etc and that you are comfortable with a modified chemo plan.

    Keep up that fantastic recovery!

    Hugs,

    Marie who loves kitties

    Does radiation-induced pneumonia cause scarring on lung tissue
    as "regular" pneumonia? I ask because bad case of pneumonia in 1995 resulted in scarring my lungs a bit, which may show as other things on scans.......Hope none of this in your case....steve
  • AnneCan
    AnneCan Member Posts: 3,673
    Jennie
    Sounds like good news to me!
  • geotina
    geotina Member Posts: 2,111
    Jennie:
    Wonderful news for you. Good idea to keep on the maintenance for a while. Please though ease into the juicing and stuff. Remember Donna went all in and got sick as dog from it. Send Emily a pm, she will get you started, and then every few days increase it. Keep a journal or notepad so you know when you started stuff, what you did, etc. Make sure you buy your supplements from a reliable source. Again, Emily can probably point you in the right direction on that also. Just be careful what you are buying, anyone can set up a fance webiste, ok girl! And prices, they are all over the place, expensive does not necessarily mean the best.

    Now go celebrate, do something fun, then continue your battle........

    Hugs - Tina
  • Fight for my love
    Fight for my love Member Posts: 1,522
    Wow,this is amazing
    Wow,this is amazing news!Keep going,Jennie.
  • johnnybegood
    johnnybegood Member Posts: 1,117
    geotina said:

    Jennie:
    Wonderful news for you. Good idea to keep on the maintenance for a while. Please though ease into the juicing and stuff. Remember Donna went all in and got sick as dog from it. Send Emily a pm, she will get you started, and then every few days increase it. Keep a journal or notepad so you know when you started stuff, what you did, etc. Make sure you buy your supplements from a reliable source. Again, Emily can probably point you in the right direction on that also. Just be careful what you are buying, anyone can set up a fance webiste, ok girl! And prices, they are all over the place, expensive does not necessarily mean the best.

    Now go celebrate, do something fun, then continue your battle........

    Hugs - Tina

    good
    im glad you got all that straitend out and good luck on the new diet..Godbless...johnnybegood
  • lesvanb
    lesvanb Member Posts: 905
    news made my day Jennie
    YAY!!!!

    all the best, Leslie
  • KathiM
    KathiM Member Posts: 8,028
    WOW!!!! What a RIDE!!!!
    I am so glad that it is figured out!!! And that (it sounds strange to say...) the lungs problems are pneumonia.

    And what a great onc you have!!! Willing to consider other treatments as well as the traditional!!!

    I am sending big hugs to you, my dear!!!

    Hugs, Kathi
  • lisa42
    lisa42 Member Posts: 3,625
    good news
    Hi Jennie,

    Hey, this is all really GOOD news! I'm so glad to hear it! I was a bit worried when I first clicked on your thread, but so relieved to hear the lung spots are shrinking & that one actually disappeared!
    You go on the natural stuff! I agree w/ the onc- with stuff still being there, I would not give up the chemo- do it at the same time.
    I follow up w/ my naturopathic dr. tomorrow & I'll let you know how that turns out- we can compare notes.
    Take care of yourself and get well soon!

    Hugs,
    Lisa
  • idlehunters
    idlehunters Member Posts: 1,787

    Wonderful news!
    Dear Jennie,

    So very happy for you...all this sounds great...even if you still have the pneumonia.

    Glad to that your onc agreed to your wanting to move to the supplements, juicing etc and that you are comfortable with a modified chemo plan.

    Keep up that fantastic recovery!

    Hugs,

    Marie who loves kitties

    Thanks Marie!!
    Thanks for the well wishes

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787
    AnneCan said:

    Jennie
    Sounds like good news to me!

    Thanks Anne!
    Definately good news.....

    Jennie
  • LivinginNH
    LivinginNH Member Posts: 1,456
    Oh Jennie - that's wonderful

    Oh Jennie - that's wonderful news! I'm so very happy for you! :-) Best wishes, Cynthia
  • idlehunters
    idlehunters Member Posts: 1,787
    geotina said:

    Jennie:
    Wonderful news for you. Good idea to keep on the maintenance for a while. Please though ease into the juicing and stuff. Remember Donna went all in and got sick as dog from it. Send Emily a pm, she will get you started, and then every few days increase it. Keep a journal or notepad so you know when you started stuff, what you did, etc. Make sure you buy your supplements from a reliable source. Again, Emily can probably point you in the right direction on that also. Just be careful what you are buying, anyone can set up a fance webiste, ok girl! And prices, they are all over the place, expensive does not necessarily mean the best.

    Now go celebrate, do something fun, then continue your battle........

    Hugs - Tina

    Hey Tina
    Thanks for all the good advice. I have been emailing Scouty with all kinds of questions...she has been very helpful. My Naturopathic Doc is great on a lot of this...she has been holding back...waiting on my to give her the go ahead on a full fledge plan of action.... I won't see her until March 2nd so until then I am winging it and going strictly on research and what I have learned here from many. How is George doing? Take care.

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787

    Wow,this is amazing
    Wow,this is amazing news!Keep going,Jennie.

    Keep going and going and going....
    Hum...... does that put me in a class with the Everready Bunny???? LOL.. Thanks for the encouraging words!

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787
    lesvanb said:

    news made my day Jennie
    YAY!!!!

    all the best, Leslie

    Thanks Les!
    Hey..you do the Vitamin C infusion right??? Have you found that to be an advantage?

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787
    KathiM said:

    WOW!!!! What a RIDE!!!!
    I am so glad that it is figured out!!! And that (it sounds strange to say...) the lungs problems are pneumonia.

    And what a great onc you have!!! Willing to consider other treatments as well as the traditional!!!

    I am sending big hugs to you, my dear!!!

    Hugs, Kathi

    Hey Kathi!!!
    Girl.... you know I had to kick rocks on this..... Gotta make sure I get to CP9 cause we sure had fun at CP8!!!! I said a prayer this morning before I left asking for it please to be pneumonia..... afterwards I thought..... who would have ever thought I would be praying FOR pneumonia..>LOL.... strange... Take care girlfriend!

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787
    lisa42 said:

    good news
    Hi Jennie,

    Hey, this is all really GOOD news! I'm so glad to hear it! I was a bit worried when I first clicked on your thread, but so relieved to hear the lung spots are shrinking & that one actually disappeared!
    You go on the natural stuff! I agree w/ the onc- with stuff still being there, I would not give up the chemo- do it at the same time.
    I follow up w/ my naturopathic dr. tomorrow & I'll let you know how that turns out- we can compare notes.
    Take care of yourself and get well soon!

    Hugs,
    Lisa

    Sup Lisa!
    Ya...I'm thinking it's a good idea too to stay put with the chemo...can always make a decision later on that. I am so excited to exchange info on ND's and what we are doing and how it is going. You gonna make it to CP9 this year???? Hope so! Take care

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787

    Oh Jennie - that's wonderful

    Oh Jennie - that's wonderful news! I'm so very happy for you! :-) Best wishes, Cynthia

    Hey Cyn.....
    Thank you! I am just so excited not to be facing MORE mets.... you take care.

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787

    good
    im glad you got all that straitend out and good luck on the new diet..Godbless...johnnybegood

    Thank you!
    Johnnybegood! Thanks for the well wishes. How are things going with you? You take care.

    Jennie