Stable but scared~~~

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  • October 12, 2014 at 5:38 pm #85096
    marions
    Moderator

    Patty……so sorry to hear about the (possible) lung metastases. But, as Melinda mentioned and many other have posted, it is not an uncommon occurrence with this disease. Often though it is a lesser problem and many simply live with it.
    You might want to take a look at Ken reporting on wedge surgery, June 9, 2012
    http://www.cholangiocarcinoma.org/punbb/search.php?action=show_user_posts&user_id=8608
    CA 19-9 fluctuations are witnessed frequently, but the physicians will look for the trend (up or down) so the following blood tests will be watched closely.
    I think that most of us are wondering about the term “stable” in regards to imaging reports. Guidelines are put in place and in your case “stable” means small changes that do not meet the below criteria:

    •CR (complete response) = disappearance of all target lesions
    •PR (partial response) = 30% decrease in the sum of the longest diameter of target lesions –
    •PD (progressive disease) = 20% increase in the sum of the longest diameter of target lesions

    Therefore, if the tumor is still visible, is not 30% smaller since last scan or has not increased by 20% then it is considered stable.

    Hang in there, Patty. No other sign of the disease has been detected, perhaps the lung issue can be resolved or followed by observation only.

    Sending tons of hugs your way,
    Marion

    October 12, 2014 at 4:33 am #85095
    vdaviscircaone-com
    Member

    Dr. Javle is my doctor, too, at MD Anderson and I think he is wonderful – really on top of his game. I trust him with my life….literally. I am new to this – just had my 2nd round of chemo 3 days ago.
    I have already realized that this thing is too overwhelming for me to handle alone so I have turned it over to God. He will work through our doctors and support groups, friends and family.
    Everyday I pray for each and every one of you on here. I believe you are going to be just fine. God is holding you and all of us in the palm of His hand.

    October 12, 2014 at 4:19 am #85094
    mbachini
    Moderator

    Dear Patty,

    I have had several mets to my lungs since very early on in my journey….almost 5 years now. My oncologist treated them and tumors in my liver after resection with chemo. First was Gem/Cis, then Gem alone and then Taxotere. Before I found the immunotherapy trial, I started to get short of breath and I had a chronic cough but that was two years into having them. As of now…I am hoping they still are shrinking. I will find out in two weeks at my next appointment.

    Congrats on treatment break for 11 months! That alone is great news! That is great that Dr. Javle is on top of things, it sounds like you are in great hands! I know it is scary to get any news of new growth but I am so glad that your faith is not shaken, God is with you! Keep up the healthy lifestyle, it always helps. Keep the Faith, hang in there and know we are all here for you!
    Melinda B.

    October 11, 2014 at 10:01 pm #85093
    lainy
    Spectator

    Dear Patty, to me the most important thing you heard from Dr. J. is that if required he will attack! There is hope in there and since you can do nothing for 4 months the stress will cause more damage than good. I know easier said then done but you are strong and you will get through this. The ladder upwards may have a few broken rungs on it but it is still able to be climbed. Cheering in your corner. Remember rain also makes the flowers grow.

    October 11, 2014 at 9:43 pm #10645
    patty-in-illinois
    Spectator

    October 6th and 7th, I had checkup appointments at MD Anderson. It has been 11 months since IMRT and I was considered very stable with a CA 19-9 of 9.2. No treatments whatsoever since November 2013 and I must say, it has been a GREAT HOLIDAY of sorts. It had been 4 months since my last scan and (4 months ago) there was just a small pea sized uptake in the CC area. But at this most recent checkup, there was no uptake anywhere…..just death.
    But, where there is sunshine (with cancer) sometimes there is rain. And….it rained on my 11 month holiday…. I have had previous nodules in the lungs since 2011 but they were of no concern. Today, numerous nodules in the chest that have been there since 2011 and have never been of any concern, today they had a slight uptake from the scan in July 2013. I had a few new nodules in the lungs and they ARE of concern and very likely represent metastasis. Dr. Javle states he is sure they are cancerous but so small to even measure them at this point. They are so small they cannot even biopsy them…..so, we wait. My CA 19-9 is now 10.2.
    I am bummed to say the least….the report states that there is 1. Enlarging nodules suspicious for metastasis. 2. Indeterminate mediastinal nodes.
    Just when the CC seems to be in hibernation or dead….only showing some scar tissue from radiation….this pops up. Dr. J states I will return in four months for scans and if we need to attack then, we will. He is also going to discuss my case with a pulmonary specialist/surgeon to see if they want to go in and get the nodes NOW….or wait. He states the protocol for lung chemo is very toxic………he stated it twice. (once was enough :-)…. Getting the news was almost like getting the diagnosis for CC. I am scared a bit. Dr. J states I am stable at this point but mets to the lungs does not sound stable to me. My faith has not been shaken….I know God is with me. But we all know that God will always be with us….on earth or in the afterlife. I am just not ready yet~~but are we ever :-)
    I am walking 2 – 3 miles daily with no breathing problems…..eating fairly well. Juicing in the am adding flax seed. Taking several supplements…
    So…..I am looking for advice on what to expect…..what do patients usually go on as far as chemo (if that is what the good dr decides). I am allergic to platin drugs. Anyone who has had mets to the lungs, chiming in here would not hurt my feeling a bit. I have NEVER smoked although both of my parents did. I am trying to stay as positive as possible as negativity gets a person nowhere. Is this where my battle starts going down a hill and I cannot climb back up it? I have probably read about mets to different places before but didn’t pay that much attention since I could be of no help. Any words of knowledge are appreciated right now. I am sure this is just a curve in the road…….and we will be on straight paths soon!
    Looking forward to some examples of mets from people….or what you that have been on here since ….well, a long time …..can give me for advice or where to search.

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