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stubborn lymph node

Kathleen808
Kathleen808 Member Posts: 2,342
edited March 2014 in Colorectal Cancer #1
Sooooooo it looks like the 1 lymph node is smaller but still active. AHHHHHH! The PET reprt that we picked up yesterday said "Slight anatomic improvement in an otherwise metabolically stable left periaortic lymph node suggestive of inflammatory healing although a small amount of persistent, active metastatic disease remains a consideration." We thought that meant that healing was taking place but the onc said that we know it was cancer from the biopsy back in September so it is most likely still cancer.

Everything else was clear and for that we are very grateful.

We talked about sir spheres and gamma spheres. What are the best places for those? We prefer the west coast but will go anywhere. Also Dr. Lenz consults on ****'s case, do they do those at USC?

Thought it would be over but it looks like we have more work ahead of us till this beast is gone for good.

Thank you for your thoughts and prayers.

Aloha,
Kathleen

Comments

  • msccolon
    msccolon Member Posts: 1,917
    damm lymph node!
    I don't have any info for you, just wanted to empathize with you. I also have active lymph nodes that are smaller since last scan, but still active. Dammmm those things! :)
    mary
  • pf78248
    pf78248 Member Posts: 209
    So sorry
    Kathleen,
    I am very sorry this cancer journey continues for you and ****. I really don't have any information about the procedures but want to offer our prayers and support. David started out stage 3 as well and it is devastating to find another cancer tumor. I am sure you all will find the answers and a great treatment plan. I am a huge fan of MD Anderson and would be glad to provide names but I really am unsure if these procedures are done here. My guess is they are but I do know you and **** would be seen by a team of real experts in colorectal cancer.

    Wishing all the best for you, **** and your family.

    Priscilla from San Antonio
  • dianetavegia
    dianetavegia Member Posts: 1,942
    I sure thought that sounded
    I sure thought that sounded good.

    Metabolically STABLE
    Slight anatomic improvement
    suggestive of inflammatory healing

    Now you can work on that small amount of active crap!!

    Praying for you **** and Kathleen!
  • AnneCan
    AnneCan Member Posts: 3,673
    Hi Kathleen,
    I am sorry

    Hi Kathleen,

    I am sorry ****'s lymph node is active but I am really glad it is smaller - that is definitely the right direction for it to go in! Take good care.
  • robinvan
    robinvan Member Posts: 1,012
    Hi Kathleen and ****
    I've been thinking about you for the past few days. Sorry to hear about the lymph node. I do so hope that your find a treatment plan to be finally rid of it!

    Peace... Rob; in Vancouver
  • crazylady
    crazylady Member Posts: 543
    how frustrating
    Hi Kathleen,
    I'm so sorry to hear that ****'s scan showed that the one lymph node is still active. That is so frustrating.
    I'm glad that the rest of the scan was clear and that you are looking into other options.
    Jamie
  • mom_2_3
    mom_2_3 Member Posts: 952
    Kathleen
    Kathleen,

    I was praying that you would receive better news from the scan but you and **** will gather your incredible strength and keep moving forward towards another treatment. I think of you both often (especially since my heart belongs to Hawaii....) and I hope the next procedure does the trick. Did **** do Avastin with the chemo? A friend of ours had numerous lymph nodes throughout his check and neck area (that were biopsied) and he thinks that Avastin is what did the trick for him. He has his 6 year NED coming up in May.

    I am sorry but have no experience with researching gamma or sir spheres.

    Love to you,
    Amy
  • lisa42
    lisa42 Member Posts: 3,625
    UCSD
    Hi Kathleen,

    Thanks for giving us the scan news on ****. I was sure hoping to hear an "all clear"! But, it's a pretty good scan, overall.
    So far as the SIR spheres, I think they do that at Moores Cancer Center/UCSD in San Diego (La Jolla). I've just been to Dr. Lenz once and don't know if they do that at USC. I'd think they would since they're so big. Since you've already been to Dr. Lenz, I'd check w/ him first & then also check out UCSD. I'm not 100% sure they do it there, but pretty sure- it seems like I remember reading about it being done there.

    Take care,
    Lisa
  • Kathleen808
    Kathleen808 Member Posts: 2,342
    Friends
    Friends,
    It is always good to come on here and know that you are with us on this journey. This morning when I woke up I was thinking, "I thought the cancer was going to be gone, 24 treatments, 1 year.... what?!!!" Then, I did what you all do with such grace, got up, straightened up the house, made the coffee and tried to find things to be grateful for. Really, I am so grateful that the cancer has not spread. I know it could have been much worse. So, we will look into things in the next few days and make a plan. **** is eating "Anti cancer", he is drinking a good amount of green tea, I bought some good juicing ingredients, he is still exercising, we are trying to practice meditation (we haven't been great at this), we are staying active with our church and with our friends. I want this cancer gone! Looks like we'll have to find a way to get rid of it.

    Aloha,
    Kathleen
  • Paula G.
    Paula G. Member Posts: 596

    Friends
    Friends,
    It is always good to come on here and know that you are with us on this journey. This morning when I woke up I was thinking, "I thought the cancer was going to be gone, 24 treatments, 1 year.... what?!!!" Then, I did what you all do with such grace, got up, straightened up the house, made the coffee and tried to find things to be grateful for. Really, I am so grateful that the cancer has not spread. I know it could have been much worse. So, we will look into things in the next few days and make a plan. **** is eating "Anti cancer", he is drinking a good amount of green tea, I bought some good juicing ingredients, he is still exercising, we are trying to practice meditation (we haven't been great at this), we are staying active with our church and with our friends. I want this cancer gone! Looks like we'll have to find a way to get rid of it.

    Aloha,
    Kathleen

    Kathleen and ****
    I know what you mean. We met with our Onc yesterday. We know John's cancer will never be gone but are thankful he is stable and some mets have improved. I want it gone too!! It is so hard. Glad you are looking forward. Take care. Love and best to the both of you. Paula
  • tootsie1
    tootsie1 Member Posts: 5,036
    Sorry
    I'm sorry you didn't get a report that said ALL CLEAR, but that day will come. We'll keep praying about that!

    *hugs*
    Gail
  • Kathleen808
    Kathleen808 Member Posts: 2,342
    figuring out a plan
    Hi Everyone,
    We will meet with doctors this week. We think we will go to the Mainland, probably Southern California to take care of this lymph node. Do any of you know a surgeon who specializes in cancer surgery and lymph nodes? Someone on another board mentioned a doc at Cedar Sinai.

    Thanks for you support.

    Aloha,
    Kathleen
  • geotina
    geotina Member Posts: 2,111
    Kathleen and ****

    Sorry about that stubborn lymph node. The rest of the news looks really good. Don't know about lymph node surgery but if not here someone on the Colon Club may be of assistance in that area.

    Take care - Tina
  • emrose
    emrose Member Posts: 136
    Oh no!
    This was not the update I was hoping for! I'm so sorry you arent getting a break from this! I know it's just soooo draining! I think surgery is the way to go. Get that darn lymph node outta there!!! Please keep us posted.
  • Sonia32
    Sonia32 Member Posts: 1,071
    Hey Kathleen
    I am so sorry that **** can't get rid of this stubborn lymph node. I hope your medical team can get rid of it by surgery. Praying for you both, and **** will hear the words ned very soon I know it.
    Hugs
    Sonia
  • dorookie
    dorookie Member Posts: 1,731

    figuring out a plan
    Hi Everyone,
    We will meet with doctors this week. We think we will go to the Mainland, probably Southern California to take care of this lymph node. Do any of you know a surgeon who specializes in cancer surgery and lymph nodes? Someone on another board mentioned a doc at Cedar Sinai.

    Thanks for you support.

    Aloha,
    Kathleen

    Hang in there
    Sorry it wasnt the news you wanted to hear, I will be praying that you find a plan that will work and **** will be NED very soon. Its a hard road to go down, but remember you are not alone and we are all pulling for **** to be NED and for some peace for all of you.

    Your Friend
    Beth
  • angelsbaby
    angelsbaby Member Posts: 1,165
    Sonia32 said:

    Hey Kathleen
    I am so sorry that **** can't get rid of this stubborn lymph node. I hope your medical team can get rid of it by surgery. Praying for you both, and **** will hear the words ned very soon I know it.
    Hugs
    Sonia

    Hi
    I am sorry about the news kathleen, but i hope that **** will be well soon keeping you and **** in my thoughts

    michelle
  • sfmarie
    sfmarie Member Posts: 602

    figuring out a plan
    Hi Everyone,
    We will meet with doctors this week. We think we will go to the Mainland, probably Southern California to take care of this lymph node. Do any of you know a surgeon who specializes in cancer surgery and lymph nodes? Someone on another board mentioned a doc at Cedar Sinai.

    Thanks for you support.

    Aloha,
    Kathleen

    Kathleen
    I can highly recommend Stanford for the SIR Spheres. My sister and I met with the Interventional Radiologist at Stanford (I cannot remember his name right now but will look it up for you) and he was incredibly smart, young, and a great bedside manner. He has done hundreds of these treatments and we were so hoping my sister would have this with him. However, her insurance declined her after several appeals written by the doctors at Stanford and even the SIR Spheres company themselves. My sister is currently under Dr. Lenz's care and I am sure USC has this procedure as well. They have a huge cancer center.
    We also went to a conference at UCSF where we met the whole team of colon cancer doctors. They truly have a team approach there and I will tell you the Colorectal Surgeon and the Interventional Radiologist there were quite impressive as well. USC does not seem to have a team approach, I know they do not do HIPEC there. But I will tell you that Dr. Lenz is the colorectal expert. You may find though, since he is in such high demand, that you really really need to be your own advocate there.
    Please PM me if you need more info. I have been praying for **** since you started this journey and pray for a happy ending soon!
  • Kathleen808
    Kathleen808 Member Posts: 2,342
    Hi
    Hi wonderful and knowledgable friends,
    As everyone knows having a plan does so much to our well being. Last Saturday was a hard day and this Saturday we have a plan and all seems well. We spoke with Dr. Lenz's office and they agree that surgery is the way to go at this point. I will send all paperwork and the PET scan to USC to both Dr. Lenz and the surgeon, Dr. Genyk. Dr Genyk just needs to take a look at the PET to OK going ahead with the surgery to remove the lymph node. Because **** was on Avastin, he has to wait 6 weeks for the surgery. It looks like we will fly to LA mid May for the surgery. **** also has an appointment with Dr. Lenz that week. Then, we will formulate a plan. **** met with a naturopath on Wednesday and the doc backed up everything in "Anticancer", focusing on getting rid of inflammation. She recommended gluten free as well. ****'s onc here liked all the suggestions, including acupuncture. **** will start that next week. The naturopath recommended "CoCurcumin" (Curcumin plus MCT and CoQ10) everyday to fight inflammation as well. Since **** is off Chemo for the 1st time in a year he wants to do all he can to see that the cancer does not grow as he gets ready for surgery.
    By the way, from another group I got this amazing video on gratefulness. I think you might enjoy it as well.

    http://www.youtube.com/user/Gratefulness


    Aloha,
    Kathleen
  • acabaricsocial2
    acabaricsocial2 Member Posts: 1

    Hi
    Hi wonderful and knowledgable friends,
    As everyone knows having a plan does so much to our well being. Last Saturday was a hard day and this Saturday we have a plan and all seems well. We spoke with Dr. Lenz's office and they agree that surgery is the way to go at this point. I will send all paperwork and the PET scan to USC to both Dr. Lenz and the surgeon, Dr. Genyk. Dr Genyk just needs to take a look at the PET to OK going ahead with the surgery to remove the lymph node. Because **** was on Avastin, he has to wait 6 weeks for the surgery. It looks like we will fly to LA mid May for the surgery. **** also has an appointment with Dr. Lenz that week. Then, we will formulate a plan. **** met with a naturopath on Wednesday and the doc backed up everything in "Anticancer", focusing on getting rid of inflammation. She recommended gluten free as well. ****'s onc here liked all the suggestions, including acupuncture. **** will start that next week. The naturopath recommended "CoCurcumin" (Curcumin plus MCT and CoQ10) everyday to fight inflammation as well. Since **** is off Chemo for the 1st time in a year he wants to do all he can to see that the cancer does not grow as he gets ready for surgery.
    By the way, from another group I got this amazing video on gratefulness. I think you might enjoy it as well.

    http://www.youtube.com/user/Gratefulness


    Aloha,
    Kathleen

    Good luck and best wishes