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Mally


Mally

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Well i had an infusion port put in my chest yesterday and was a no pain thing so looking forward to not having my poor old veins poked trying to get canulars in for the blood tests and infusions of the opdivo ...Dr said scan is done after 6 infusions and i asked why im not getting the sbrt radiation therepy and he said the lymph nodes are too close to my heart but if opdivo fails then i could get normal radiotherepy and my blood test results are good so fingers crossed thats a good sign its working ...

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Ive been thinking about my visits with my oncologist and i dont see him again until may 2nd after i have scans done and my last appointment was march 14 th so does that sound like normal protocol ? I ask the nurses about my blood tests and they are all good but any questions are left until i see him again .i guess theres not much he can do but sit and wait for scans and hope the opdivo is doing its job 

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I dont even understand the mutation part and was wondering if i would be given opdivo if i didnt have the right mutation ? I feel like a deer caught in the headlights too scared to ask dr things incase i dont like what ill hear and the dr is quiet and doesnt ask me anything except How am i and that ill have scans after 6 doses of opdivo 

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Mally,

Relax.  Opdivo is an immunotherapy drug.  I think you may be confusing immunotherapy with targeted therapy.  In targeted therapy, tumors are tested for certain biomarkers or mutations, then special therapies are used when one of these mutations is revealed in the biopsy.  These special therapies then attack the tumor through the portal of the identified mutation.

Your treatment -- immunotherapy -- does not work the same way.  Opdivo enables the immune system to recognize and attack cancer as an invasive disease. The classification of Opdivo is an Immune Checkpoint Inhibitor and it's name reveals its function.  It keeps proteins in the immune system from hiding the cancer so the T-cells (in white blood cells) can find and destroy the cancer.  

During my chemotherapy treatment, I normally saw my medical oncologist at the mid point of treatment and after treatment and after diagnostic scans were performed.  So your consultation schedule, if I understand your description, sounds like mine.  You might try asking some of your questions to the oncology nurses during your infusions.  I found my oncology nurses very knowledgable about cancer and the drugs I was receiving.

Stay the course.

Tom

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Thankyou Tom i really appreciate your explanation of my situation and as usual i feel better after i read it .....you missed your calling to be a doctor because you wouldve been a great one ...

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Mally,

My mom is on an immunotherapy drug as well - Keytruda.  Her infusions are every 3 weeks.  So, her schedule every three weeks is - Blood draw, meet with doc, then infusion.  CT's (chest xrays can't see my mom's cancer very well) are done every 3 months.  She only sees her oncologist every other visit, so every 6 weeks, as long as everything is going fine.  The other times, she see's an oncology nurse who is in direct contact with the oncologist.  And the oncologist definitely meets with her when she has her CT's.  From the looks of it, your next oncologist appointment is about 6 weeks from your last appointment. So I would say that although it seems like a long time in between appointments, they are on track from what I have seen with my mom.

 

 

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Thankyou Steff and it looks like my schedule is normal by yours and others comments so i just need to write down things i want to know and ask when i see him ...

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  • 1 month later...

Mally

Just thinking about you and wondering if you've had your first post-Opdivo scans. I know we were pretty close together and I had mine a few weeks ago. This was the first thread I found to ask though I know it's an old one. Could we get an update? Perhaps you posted one and I missed it? I care. Have really been hoping for good results for you. 

Judy M. 

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Hi Judy and i have had my scans and very good news that the 3 lymphnodes had shrunk considerably and there were no new nodules or masses anywhere so im very happy about the report and still no side affects from the opdivo so new scans in 3 /4 months he said ..I did write about the results on the forum so im sorry you didnt see it...and how are you going ?

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That's great! This Opdivo is wonderful stuff in my book. And I'm doing fine. My scans showed stable. Oncologist hasn't said anything about next scans so I'm just assuming it will be the standard 3 months. 

Judy M

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Thanks everyone. Yes, Tom, I'm an Opdivo fan. Has worked so far and, like Mally, I've had no side effects. In fact, other than the procedure on my hip I've felt great. I was thinking the other day that my vote would go to SBRT and Opdivo as first line for anyone who can. My Radiology Oncologist often commented on how well I was doing. He said it was because I'd had little chemo. If those two were first line the health to maintain the fight would be better. And I also think it's being shown that they are simply more effective. 

Judy M

 

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I agree with you Judy on all counts and i saw the oncologist today before my opdivo treatment and he asks how im feeling and i say great almost as if not having treatment and i said can make one think its not working ( jokingly ) and he smiled which i dont see him do much of and he said my scans show its working and my blood work and oxygen sats and blood pressure etc are all perfect so i felt i had a spring in my step and ive started a nutritarian type diet with lots of veg fruit nuts seeds and small amount of dairy and meat and fat because i thought it would be good to help my immune system out and the immunotherepy treatment not to mention my diabetes...

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