edivebuddy
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Posts posted by edivebuddy
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Good luck to you.
- Blossomsmom and LouT
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Ask if they will be performing a Rapid On Site Evaluation. They look at the tissue right there in the operating room. (Some have separate rooms but close)
You've already started the rehab and it is going to go a long way towards your recovery. Follow their plan and move as much as possible.
- Livin Life and LouT
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Unfortunately a PET sucks at seeing early cancers. AIS and MIA lung cancers normally show way less than an SUV of 2 . I'd continue to follow the doctor's advise. Continued good luck to you. AIS and MIA Lung cancers have a 100% 5 year survival. AIS. Has a 100% 10 year survival if treated.
- Livin Life and LouT
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I personally would not delay with a rescan or a separate biopsy. Even though not 100% odds are high of it being malignant. Stage 1a lung cancer stops at 10 mm your at 9 now. While it's not known how fast it's growing, every day you wait is a day closer to 1b. While that's still very wet early it's not 1a. 1a systemic (chemotherapy, immunotherapy, targeted treatment) are not even offered. While because of your history they would most likely recommend it if you were 1b.
This is the very reason they no longer wait for 10 mm to do a biopsy and now do it at 8 mm
Good luck to you. ROSE may come back benign.
- NYC GUY, Livin Life and TJM
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Still haven't found the study. Here's a story that referred to it. Not a 20 year study had 100% survival in part solid tumor and only. Only 80% for solid tumors less than 1 cm found with early screening. Part solid tumors point to faster not necessarily fast growing tumors while part solid or ground glass nodules are associated with slow growth and longer term survival.
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Being lungivity let me go find a 20 year study of early detection references solid vs part solid
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I personally would get a vats fine needle biopsy with a rapid in site evaluation ROSE. That way a positive finding gets you a resection right then and there. An early resection is your best chance for a cure. Good luck to you and sorry you're even faced with this decision.
- Livin Life, LouT and TJM
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I personally would feel comfortable waiting. Strange about your pulmonologist. You like a lifetime income stream 😁 ground glass is more likely to be malignant than a solid module. But a malignant solid module is way more dangerous. In my opinion multivocal has a very good chance of being the first lung cancer with a cure.
A was having a problem with inspires AI pretending to have feelings. When it says it understood I lost it considering the site says peer support from People like me. Then the mod deleted a post and called me not supportive or nice. That was definitely the straw. They can keep their bot and definition of supportive. I will not aid in their success at the cost of my own mental health. Stress is bad. No point subjecting myself to more of it.
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Sounds like multi focal lung cancer. Very slow growing. Are you on inspire? VanCoerte there has been dealing with this for a couple decades. Like 4 wedge resections and 1 SBRT treatment over the years. It's nearly impossible to biopsy a tumor with less than an 8 mm solid component. They used to wait till it was 10 mm but many will try a biopsy now at 8. There is of course a surgical biopsy but that's pretty extreme.
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Sorry you're dealing with this and so very young. Too young to be giving up while therapy is working. The addition of chemotherapy to tagrisso reduces the risk of recurrence by 38%. For tagrisso that's huge. You have a very good chance of managing this disease for a long time. especially if you can get it into full remission. Chemotherapy is doing that for you.
If you expect to have your blood numbers to be normal it's not realistic. The doctors are really good at figuring out your numbers and what they mean or if there's a problem. And if there is, stopping treatment is usually NOT the first or prudent choice.
I did 7 rounds of chemo. My blood numbers were NEVER in the normal ranges. Twice we had to delay my infusions to take care of problems but we continued. I achieved a full remission over 3 years ago. Stage IV. END Stage presentation with cutaneous metastasis. Additional metastasis' to the brain neck and liver. Plus stage 3 poorly differentiated squamous cell carcinoma of the head and neck just because the lung cancer wasn't bad enough.
- Marie002 and Livin Life
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I've never used sun screen or tanning lotions. Believing since I've never burned I didn't need it. Now I find out that I can still get skin cancer and my mom who's spent way less time in the Sun than I has had spots cut out .
Then somehow I missed I'm supposed to avoid sun exposure while on Avastin. Maybe selective memory.
Kamoto 嘉本 can be a Japanese name.
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Sorry you find yourself with this diagnosis. Nearly 4 years ago I was diagnosed with stage IV NSCLC spread to my brain neck liver and skin. Because of the skin Mets I was not given long even if treatments worked. I may be a tad Slower and a little worse for wear but I'm here. Living life and enjoying myself as before. A few extra appointments throughout the year nothing that interferes that much.
You can read some of my story here.
I have not finished catching up. But it will give you a good idea.
This is by far from a death sentence . The goal is to manage it until the next treatment or cure becomes available.
- LouT and Livin Life
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54 minutes ago, Karen_L said:
@edivebuddy, I was initially staged at III, with spread to hilar and other lymph nodes, IOW, soft tissue
Lymph nodes are not soft tissue. They are by far the most common metastasis sites. They are organs. Soft tissues are tissues other than bone that connect or surround the organs of the body not the organs themselves.
https://www.cancer.org/cancer/understanding-cancer/anatomy-gallery/soft-tissue.html
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It's impossible to say with certainty from just a PET scan, I too would be worried. But lymph nodes are routinely hypermetabolic. 10 seems high but still not certain for malignancy. I've personally had many hypermetabolic benign lymph nodes. Highest SUV of 6.
One very telling sign that this is NOT progression is that the Imfinzi continues. It's generally stopped on progression. Your oncologist should be able to tell you why they don't feel it's progression.
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QqIt's extremely rare for Cancer to metastasize to soft tissue. Generally solid tumors set up shop in organs. Most of mine were in lymph nodes but one was head and neck cancer That May have been soft tissue or a lymph node so overrun it was indiscernible as one. Both skin and bones are organs .
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Yes they are rare but Axillary lymph node ( under arm) and cervical lymph node ( groin) fo happen. I've rarely heard of both I've even seen a metastasis to toe. Since all blood goes through the lungs, where ever it lows the cancer can follow.
personally mine were 1 small met ton liver, Chest and neck too many to count. 1 skin met and 3 to the brain plus one that was probably a pineal cyst.
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On 2/21/2024 at 5:41 PM, Marie002 said:
The Claritin is a surprising
They've known histamines were associated with cancer for a long time but not real how. Turns out that the tumor micro environment pumps out histamines which triggers dysfunction in HRH1 activated macrophages. So even if the PD1 PD-L1 oath were blocked these macrophages still didn't kill the cancer. So the H1 blocking anthistamines are thought to stop this dysfunction.
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I'm so tired all the time.
Food taste off when I eat it. Not really hungry with all that's going on. Plastic soup spoons take the metal taste away. So chopsticks are Japanese soup spoons it is. Luckily my house is full of both.
Pants don't fit but sweats are fine. Need button up shirts to get over this tumor on my neck.
Sleeping is not happening for longer than a couple of hour or so. Have to have my dressings changed on my neck . 2 Abdominal dressings last about 2 hours then drain . I have a beach towel as back up.
September 20 2020 the results are in. Finally.
Genetic testing results are in. They're for my brain tumors. All targetable mutations are negative. But my PD-L1 is 100% . My oncologist's says I've won the lottery and it's not often to our see 100%. What happened to the other biopsies?
Pembrolizumab( keytruda) is the standard of care. Keytruda, Carboplatin and Alimta every 3 weeks for 4 to 6 treatments (minimum of 4) Then Alimta and keytruda maintenance for 2 years.This is where it's nice to personally know your second, in this case third opinion. He tells me as long as everything is going okay and I'm on the standard of care, it's going to be way better being treated here then going the 6+ hours down there. In 3 1/2 years my wife has driven me back and forth over 150 times. Oncologist, radiation oncologist, neurologist, neurosurgeon, dermatologist , ophthalmologist, PET Scans, CT scans MRI, infusions, fluids. That was just for the cancer.
Moffitt would have been an EXTRA 92,400 miles driven.
If it would have cost it would have been worth every penny.
take a multivitamin that contains vitamin e. I also take Claritin (loratadine) every day for my Florida induced allergies. So with the retirement to Florida came year long allergies. Something is always blooming. These would become important and may have helped my treatment. At the time I did not know.
Up next Keytruda the vanquishor -
Sorry your facing this. Were any lymph nodes tested yet? I've had no experience with lung surgery but I've had plenty others and they were all not as bad as I had imagined. My nowel resection was probably the worse and brain surgery was the easiest and scariest by far. I'm sure you'll get a response from those that have had a wedge resection or lobectomy that can better guide any questions you may have.
As far as the cancer. Lung cancer is not the death sentence it once seemed to be. Atypical carcinoid probably has the best prognosis as a type. With 5 and 10 year survival being so high, chemotherapy after surgery doesn't even have a consensus of the alphabet soups.
Good luck to you. I'm sure it's not going to be a bad as you're imagining.
Still stable
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Nice. I love reading Stable. Stable is a great term.