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Mally


Mally

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Well just back from having a biopsy on my enlarged lymph node and now the waiting for results next wednesday ...was hoping he would come and say he had good news for me today because they have a pathology station in the theatre but looks like ill have to wait until wednesday 

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Hi Mally,  I wonder if you know this Tom Petty song:

"The waiting is the hardest part 
Every day you see one more card 
You take it on faith, you take it to the heart 
The waiting is the hardest part"

This  could be a cancer survivor theme song!

The quote is j;ust the refrain-- the verses aren't really relevant to us, 

Hang in there!

Bridget O

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Well results showed cancer in the lymph node so treatment will start in a week or so but not sure what yet but hoping immunotherepy and possible chemo first .....will know more when i see the oncologist because it was the surgeon that gave me results.....anyone had recurrence in lymph node ? 

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Mally,

I've not had a recurrence in a lymph node but it is indeed common. Ask your oncologist about the possibility of having SBRT to fry the cancer in the effected lymph node.

Stay the course.

Tom

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Thanks Tom ill ask when i see the oncologist hopefully an appointment will be next week to see what treatment ill get but the surgeon that did the biopsy said i may get immunotherepy ....whats your thoughts on that ?

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Mally,

Let me test my memory.  I recall you had surgery and they found but did not remove lymph nodes during the surgery.  Then you had conventional chemotherapy, two drugs, but I cannot recall the names.  I cannot recall the type of lung cancer you have to refresh my memory.

I've not had immunotherapy but have read a great deal about it and have listened to several doctors and researchers describe how and why it works.  For those with the right biomarkers (PD-1 and PD-L1 I believe) it can be very effective.  Even for those who don't have those markers, it can be effective when given in combination therapy with conventional chemotherapy.  So it can work.  So can SBRT radiation, especially on a lymph node.  Doctors in your case may be concerned about progression (in the blood or lymphatic system) and therefore the suggestion of chemotherapy.  I'd hope both are available for you down under.

Stay the course.

Tom

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Mally,

My mom is on immunotherapy - Keytruda.  Over 90% of her cancer cells test positive for PD-L1, so she is a great candidate for the drug.  I believe you checked out my posts about her continued treatment - "Finding Hope in my Mom's Cancer Journey".  I try to update the post monthly to share any new information.

Please keep us updated on what your treatment plan is so those of us that are familiar with it can chime in.  My personal opinion on immunotherapy is that it is a wonderful new option for those who respond well to it.  My mom and I are of old school thinking that cancer should be cut out or radiated/burned out whenever possible. So when we were told that her cancer recurrence was inoperable and not recommended to be radiated due to the close proximity to her previous radiated area, we were not happy.  We were also not happy to hear that their recommendation was this new stuff called immunotherapy.  But six months later, we are pleasantly surprised by the results!

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Mally,

I had a recurrence in a lymph node last spring.  I had a CT-guided needle biopsy to confirm; the lymph node was in an inconvenient location.  I wasn't eligible for any immunotherapy so Super Doc prescribed 8 rounds of chemo and 30 days of radiation.  I had a clean CT in August and a clean PET in October.  A recurrence can be beat!

Keep us posted.

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Thanks Tom ill ask when i see the oncologist hopefully an appointment will be next week to see what treatment ill get but the surgeon that did the biopsy said i may get immunotherepy ....whats your thoughts on that ?

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Having pet scan on the 18th jan so more delay in treatment is making me more anxious than i was when first diagnosed and i know theres a lot of people waiting for tests but i just wish they could start something now 

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Mally

I SO know how you feel! I'm sure pretty much all of us have felt this way. Sometimes you just want to scream, "Hey guys, has anyone told you that my cancer isn't on hold while you get all these tests scheduled and done? Do you know tests don't treat ANYTHING?" That's pretty blunt, but exactly what I've thought. Being a cancer patient is certainly an exercise in patience. Hope they get moving soon. 

Judy M. 

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Susan did you have a pet scan before you started your chemo and radiotherepy for the lymph node ?

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Well biopsy positive for cancer cells in they enlarged lymph node so that was done on 29th december and now have to wait till 18th jan for a pet scan and see the oncologist on the 24th jan to see what treatment ill have  so does this seem like a long time to wait seeing as they know the cancer is in the lymph node ? I told dr on the 29th that i have a holiday booked and paid for the 14 feb and he said then they can work around that but from when i see oncologist it will be just 3 weeks to go so im hoping i can get a tablet form of treatment after 3 weeks of radiotherepy if thats what they decide for me.....so just wondering if its ok to take a break during treatment ? I feel scared now about what pet scan will show because ive been too long to start treatment ....any thoughts on this plz ...

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Mally,

Any delay for me during my active treatment seemed like an unusually long time.  I don't know enough about Australia's medical system to give an objective answer.  In the US, delays seem to be common in the early diagnostic typing and staging process.  Once in the system, however, things move pretty quickly.  My scan delay during recurrences was about a week to take the test, then perhaps a week to 10 days for results.  The most variable part of the delay was my physicians appointment calendar.  

I delayed one of my scheduled chemotherapy treatments for two weeks for a Hawaii vacation.  The vacation was booked prior to starting chemo and my doctor encouraged me not to cancel it.  

I wish there was something I could do to accelerate your process!

Stay the course.

Tom

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Thankyou Tom and i have nsclc adenocarcinoma 3A but dont know if there are different grades ? I had a high grade Sarcoma cancer in my leg nearly 6 yrs ago treated with radiotherepy and surgery but havent heard if they grade lung cancer or just stage it ...

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