Pet Scan Results for Mom

Faithandstrength
Faithandstrength Member Posts: 19
edited June 2016 in Colorectal Cancer #1

Hi Everyone, it's been a while since I've posted. My mom just had her PET scan done and the results said that everything significantly decreased in size. I started crying from happiness because I haven't missed one appointment with her and I've been there along the way with the rest of my family. She's had 6 rounds of chemo done and she's going in for her 7th. 

I'm just concerned and curious about the next steps. Her doctor asked her what she wanted to do next and she responded by saying I feel it's not necessarily what I want, but what's best. Then, I asked the doc that in the beginning we had discussed her having to get 12 rounds of treatment. Then, she would be on maintenance, a pill like Xeloda. The doctor said yes. 

I'm waiting for our next app to talk to the doctor now that our excitement about the results has settled down because do we or would we have the option of having her just switch to the pill? Is that even a good idea? I guess I'm scared of the chemo doing her damage 6 vs 12 rounds is a lot and I just wanted to ask and see what your experiences and thoughts on this were.

Also, I wanted to know how else will we track her progress after this would she get another pet scan in 3 months?  I have been told that the PET scans can't be done frequently due to the radiation. I'm concerned at what point do the tumors in your body stop responding to the drugs? I would hate for her to continue chemo go through the 7th 8th 9th cycle etc only to then learn it stopped working and we had to switch to something else. 

i just want to make sure I'm taking the right steps. I love her so much and it was so nice to see her happy and get good news, it gave her hope. She started humming a song today when she was washing the dishes and it just made me so emotional because it was just like the old times.

Thank you so much. 

Comments

  • Faithandstrength
    Faithandstrength Member Posts: 19
    #2
    I posted on the site before,

    I posted on the site before, but to add mom has mets to the liver and lung and she's 57 and was on no medication and healthy before her diagnosis. 

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #3
    Hello again.

    I am glad to hear that all is going as planned with your mum (who is the same age as me, so young). 

    It is hard when you are faced with decisions. I always thought that the Doctor's would be in total control (some are) and was surprised when at times I was offered 'a choice'.  Choices are hard when you know that the outcome can be life or death or continued suffering. 

    As for continued scans. My guess is that she will be having CT Scan at three month intervals. Most of us follow that route, with PET Scans ordered when something on the CT looks questionable or not clear. 

    There are studies out there, recent ones, that say 6 - 9 months of Oxaliplatin is enough. I myself (NED two years and stage IV) did nine treatments.  

    But when push comes to shove, your mum will make the decision that is best for her.  The strength and love she feels from you, must be such a bonus. No wonder she is humming her favourite tunes. The love of family can carry you on and make you stronger. 

    There are members here how can advise you more. Especially with the lung mets.  I had a liver met that was dealt with using Thermal Microwave Ablation. As you know, there are many options, and studying up on them is important.  

    Keep the faith.

    SUE

     

  • Faithandstrength
    Faithandstrength Member Posts: 19
    edited June 2016 #4
    Trubrit said:

    Hello again.

    I am glad to hear that all is going as planned with your mum (who is the same age as me, so young). 

    It is hard when you are faced with decisions. I always thought that the Doctor's would be in total control (some are) and was surprised when at times I was offered 'a choice'.  Choices are hard when you know that the outcome can be life or death or continued suffering. 

    As for continued scans. My guess is that she will be having CT Scan at three month intervals. Most of us follow that route, with PET Scans ordered when something on the CT looks questionable or not clear. 

    There are studies out there, recent ones, that say 6 - 9 months of Oxaliplatin is enough. I myself (NED two years and stage IV) did nine treatments.  

    But when push comes to shove, your mum will make the decision that is best for her.  The strength and love she feels from you, must be such a bonus. No wonder she is humming her favourite tunes. The love of family can carry you on and make you stronger. 

    There are members here how can advise you more. Especially with the lung mets.  I had a liver met that was dealt with using Thermal Microwave Ablation. As you know, there are many options, and studying up on them is important.  

    Keep the faith.

    SUE

     

    Thank you

    Hello, thank you very much for the reply. I am happy to hear you are a strong fighter. My mom had Oxaliplatin as part of her treatment during the first round, but it was so strong for her, she was practically knocked out for many days the first time, so it was taken out and she received the usual 5-FU, irinotecan, then eventually Avastin. This combo worked well for her.  So, I guess my question will be if and when will the doc reintroduce Oxaliplatin since it was strong for my mom in the beginning. It's been only about 3 months of treatment so far. 

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    edited June 2016 #5
    I'm 58 now but was 49 when I

    I'm 58 now but was 49 when I did Folfox[all 12], endured minor effects for 18 months or so. Many evaluate how they're affected after each round, and some stop it early, but if early rounds showed progress, I don't think I'd expect tumors to be resistant by the end of one regime. Oxi's a ****, no doubt, but I'd take what I could endure if the docs felt it was working. That's an individual call, and some here regret doing all 12, and some have fairly permanent discomfort and effects from the stuff. In my case, with two liver reoccurances, it didn't work in my case, so I can't offer much useful perspective on your mom's case, just my hope that whatever comes, it was the right choice, and a good outcome.....................Dave

  • BillO60
    BillO60 Member Posts: 72
    #6
    Finished 8 cycles of Oxaliplatin

    Hi Faith,

    I completed 8 cycles of Oxaliplatin infusion along with Capcetibine (oral) in April.  One thing they gave me before each infusion was IV Decadron to help reduce some of the side effects.  For some patients they gave IV Benadryl and some type of anti-nausea medication.  The Oxaliplatin was considered  First Line and I was on it in combination with the Capcetibine basically to "mop-up" any microscopic cancer cells that were missed after the removal of the colo-rectal tumor.

    The main side effect for me was neuropathy in hands and feet with other side effects most noticeable during the ten days after the infusion and then tapering off.  Sensitivity to cold, difficulty swallowing (drank warm tea and room temperature drinks the first week after each treatment) and of course the never ending fatigue.

    Of course, everyone is different and I consider the side effects I had to be relatively mild compared to some.

    The follow-up for me was a CEA and a CT Scan which showed that I'd developed mets in liver (3 lesions) and probably lung (a 5mm node) during treatment.  The CT scan was for the abdomen so they only captured the lower part of the lung.   Getting ready for a full body PET scan to determine if the lung node is in fact mets and if there is any other lung involvement. Then a new chemo protocol, probably FolFiri.

    There are many treatment options for mets but it depends a lot on the size, number, and location of the lesions. Sometimes resection is possible, sometimes ablation (radio frequency, microwave), radiation, hepatic intraarterial chemo (chemo given directly into the liver), and targeted therapy agents along with chemo.

    It can become multiple choice based on size, location, and the number of lesions.  All of that has to be determined based on the most recent scan, blood work, your mom's health, etc.

    I wish your mother the best of luck and health.

    Bill

  • Faithandstrength
    Faithandstrength Member Posts: 19
    #7
    beaumontdave said:

    I'm 58 now but was 49 when I

    I'm 58 now but was 49 when I did Folfox[all 12], endured minor effects for 18 months or so. Many evaluate how they're affected after each round, and some stop it early, but if early rounds showed progress, I don't think I'd expect tumors to be resistant by the end of one regime. Oxi's a ****, no doubt, but I'd take what I could endure if the docs felt it was working. That's an individual call, and some here regret doing all 12, and some have fairly permanent discomfort and effects from the stuff. In my case, with two liver reoccurances, it didn't work in my case, so I can't offer much useful perspective on your mom's case, just my hope that whatever comes, it was the right choice, and a good outcome.....................Dave

    Thank you

    thank you so much for your reply Dave she seems to be handling it fairly well so far on her 7th round so I'm just hoping it continues that way I'm starting to feel drained myself, but have to keep fighting for her thanks again and I hope you're doing well. 

  • Faithandstrength
    Faithandstrength Member Posts: 19
    edited June 2016 #8
    BillO60 said:

    Finished 8 cycles of Oxaliplatin

    Hi Faith,

    I completed 8 cycles of Oxaliplatin infusion along with Capcetibine (oral) in April.  One thing they gave me before each infusion was IV Decadron to help reduce some of the side effects.  For some patients they gave IV Benadryl and some type of anti-nausea medication.  The Oxaliplatin was considered  First Line and I was on it in combination with the Capcetibine basically to "mop-up" any microscopic cancer cells that were missed after the removal of the colo-rectal tumor.

    The main side effect for me was neuropathy in hands and feet with other side effects most noticeable during the ten days after the infusion and then tapering off.  Sensitivity to cold, difficulty swallowing (drank warm tea and room temperature drinks the first week after each treatment) and of course the never ending fatigue.

    Of course, everyone is different and I consider the side effects I had to be relatively mild compared to some.

    The follow-up for me was a CEA and a CT Scan which showed that I'd developed mets in liver (3 lesions) and probably lung (a 5mm node) during treatment.  The CT scan was for the abdomen so they only captured the lower part of the lung.   Getting ready for a full body PET scan to determine if the lung node is in fact mets and if there is any other lung involvement. Then a new chemo protocol, probably FolFiri.

    There are many treatment options for mets but it depends a lot on the size, number, and location of the lesions. Sometimes resection is possible, sometimes ablation (radio frequency, microwave), radiation, hepatic intraarterial chemo (chemo given directly into the liver), and targeted therapy agents along with chemo.

    It can become multiple choice based on size, location, and the number of lesions.  All of that has to be determined based on the most recent scan, blood work, your mom's health, etc.

    I wish your mother the best of luck and health.

    Bill

    Thank you

    thank you so much Bill for the reply. When we see the doctor again I'm going to ask him about oxaliplatin and if he has plans to introduce it again to my moms treatment plan. Her side effects havent been too bad now, but in the beginning it was real hard she couldn't digest her breakfast well two days after treatment and would feel nauseous.  shes doing good just the usual fatigue now im going to look into those options you listed and talk to the doc thanks again I appreciate your reply 

  • MS2014
    MS2014 Member Posts: 58
    #9
    Oxalipaltin

    Hi

    My mom had 12 rounds of oxaliplatin in 2014 and this year she staretd again but seemed to be uneffective. She is moving to irinotecan (thanks for your reply). FOr my mom oxaliplating was strong the 4 fisrt cycles but then she underwent the rest without mayor issues

    All the best

  • danker
    danker Member Posts: 1,276 Member
    #10
    MS2014 said:

    Oxalipaltin

    Hi

    My mom had 12 rounds of oxaliplatin in 2014 and this year she staretd again but seemed to be uneffective. She is moving to irinotecan (thanks for your reply). FOr my mom oxaliplating was strong the 4 fisrt cycles but then she underwent the rest without mayor issues

    All the best

    Chemo

    I cannot relate to various times of chemo(8,12,etc.).  I was given a chemo pump which delivered 1 1/4 mltr/hour of fu5 24/7.  That was for 5 weeks.getting my chemo bag refilled every Friday. Does anyone know how that relates to individual  chemo sessions?  Realy don't know if any shrinkage occured.  But became NED in 2010 and remain so today!!!

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