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VirginiaTim

Father diagnosed with 3A back in February. Follow up tomorrow. .

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He was diagnosed with stage 3A back in Feb. We just completed 30 radiation treatments and 4.5 chemos (taxol carbo) two weeks ago. He had to skip the final two because white blood cell count got rather low. They gave his body a two week rest. He's lost about 30-40 pounds but has regained a few over the past week. Tomorrow is our two week follow up and I'm not really sure what to expect. We haven't been told much other than the radiologist said his tumor was "noticeably smaller". What usually happens after you complete the first round of treatment for Stage 3A. He's been doing much better lately (cut his grass, doing his own groceries, cooking, etc.). His cough is pretty much gone and he said's he feels the shortness of breath is better. I'm trying to be optimistic but it's difficult. I'm praying for all of you afflicted by this disease. Thanks to all of you! 

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Hi Virginia,

I'm sorry to hear about your father's diagnosis. It sounds like his treatment is being helpful. Has the oncologist talked to him about the possibility of medication to prevent white blood cell problems?

I had chemo, first cisplatin and then docetaxel and carboplatin, for a cancer other than lung. (I have lung also, but early stage, no chemo needed now. ) With my chemo my white blood cells went down. In fact my neutrophils went down to zero. For subsequent rounds, I had neupogen injections and no further white blood cell crashes. I had to inject myself every day for several days after each round of chemo. There's also a long acting form called neulasta that only requires one shot, so you don't have to do it yourself. Some people have bone pain as a side effect of neupogen/neulasta, but I didn't have any side effects and found the shots really easy to do. The stuff is expensive, but fortunately my insurance covered it. 

All the best to you and your father.

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20 minutes ago, BridgetO said:

Hi Virginia,

I'm sorry to hear about your father's diagnosis. It sounds like his treatment is being helpful. Has the oncologist talked to him about the possibility of medication to prevent white blood cell problems?

I had chemo, first cisplatin and then docetaxel and carboplatin, for a cancer other than lung. (I have lung also, but early stage, no chemo needed now. ) With my chemo my white blood cells went down. In fact my neutrophils went down to zero. For subsequent rounds, I had neupogen injections and no further white blood cell crashes. I had to inject myself every day for several days after each round of chemo. There's also a long acting form called neulasta that only requires one shot, so you don't have to do it yourself. Some people have bone pain as a side effect of neupogen/neulasta, but I didn't have any side effects and found the shots really easy to do. The stuff is expensive, but fortunately my insurance covered it. 

All the best to you and your father.

Unfortunately no, his oncologist has not offered alternatives to the low WBC other than skipping chemo for 2 weeks. His Neutrophils are at 2.92 right now and WBC back to 4.4. I will look into this. Thank you!

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Virginia,

What normally happens after completion of first line Standard of Care (your dad's treatment)?Unfortunately second line, and in my case, third line and even fourth line. But, 13 years later, I'm still here. Lung cancer is persistent and to beat it, one often needs to suit up for the long game. 

Treatment methods have dramatically improved so do expect extended life but do prepare for additional treatment.  When a post treatment scan shows "no evidence of disease" or NED as we say, ensure your dad takes full advantage of it  I say this because I didn't and missed potential joy opportunities in abundance. 

This is a brief response because I'm struggling with iPhone typing and WIFI coverage.  I've many experiences to share but the most important is if I can live, so can your dad. 

Stay the course. 

Tom

 

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Hi, Tim,

How are you and your dad doing? How did his follow-up appointment go?

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Hi Lauren!

 

Thanks for the follow up. He's been given two more weeks off then starts high dose chemo on the 31st! Results from CT came in today and are as follows. Can someone help me understand? I feel like this is positive news! 

 

 

CT.png

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HI Tim,

I am not a radiologist or oncologist, but it's my opinion that the CT scan is very encouraging positive news!  There is response to treatment and decrease of the mass-which is good!  I would keep an eye on your dad for any developments of pleural effusion- which a small volume of right fluid seems to be indicated and that could go away on it's own- possible infection in the small bowel- again I'd ask about that too at the next appointment or if there is any pain.

How is your dad feeling?  How are his blood counts?  There are treatments that can help with his counts as well as blood transfusion- which can really make all the difference in how a person feels.

Please keep us posted on your dad- and you!

Best hopes,

Katie

 

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Dad went in for blood work today and WBC and Neutrophils were much higher than last weeks. He did have Neulasta two weeks ago before his first high dose chemo. Everything I'm reading online saids that increased WBC and Neutrophils carries a high mortality rate for NSCLC. Hemoglobin was in normal ranges. Is it concerning to have such a major increase in the levels in only 7 days? Thanks for any and all help. This is such a trying time for me and my family. 

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Apparently the WBC and neutrophls were from the Nulasta (sp) administered two weeks before. I didn't know it was still effective that far out! Dad got his last high dose chemo today. Not sure what happens next. Doctor said he has a "few cards in his back pocket" to play for future treatment but that we will see him again in 3 weeks and do more scans. Dad seems to be doing well. Still down 40 pounds from when all of this began but we're in it for the fight. I've considered taking him to Duke for a second analysis but not sure if that is necessary. He's been going to work half days for the past month and will be retiring the end of next month (40 years in civil defense). Hoping he makes it out of this with good news. Thanks all!   

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Just a quick update. We are now 5 weeks removed from his last treatment and 5 months since initial diagnosis for 3A. I did just find out he has adenocarcinoma. He's down to 130 pounds (started at 170) and fatigue have been his biggest issues since treatment ended. Tomorrow I take him in for a PET Scan and then a follow up with his oncologist next week. Not sure what to really expect at this point. The oncologist has not been very informative other than treatment has ended and now we wait. Is this common? 

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Tim,

Is now we wait common?  Unfortunately, yes it is.  The PET scan will reveal if your dad's first line treatment beat back his cancer.  Your dad's oncologist is waiting along with you; the only way to assess results is with the scan.  That is why we call this timeframe your dad's in Scanziety: treatment, scan, consultation results revealed, and waiting and waiting and waiting....

I'm hoping his PET scan reveals no evidence of disease or NED.

Stay the course.

Tom 

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On 8/1/2017 at 9:22 PM, Tom Galli said:

Tim,

Is now we wait common?  Unfortunately, yes it is.  The PET scan will reveal if your dad's first line treatment beat back his cancer.  Your dad's oncologist is waiting along with you; the only way to assess results is with the scan.  That is why we call this timeframe your dad's in Scanziety: treatment, scan, consultation results revealed, and waiting and waiting and waiting....

I'm hoping his PET scan reveals no evidence of disease or NED.

Stay the course.

Tom 

Thanks Tom. I suppose my biggest fear is the cancer has spread and his doctor will advise us to seek end of life care. I've had nightmares of this day. Hoping and praying for the best though. 

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Results are in!

 

1. Overall significant interval response to therapy 

2. Significant reduction in abnormal levels from previous PET scan in right lower lobe mass and mediastinal  and right hilar adenopathy. 

3. New mild FDG uptake within a moderate right pleural effusion concerning for malignant effusion.

 

I feel like it's good but the pleural effusion is concerning. He's going tomorrow to have it drained and biopsied. CT scan in May read as "There is a small volume of right pleural fluid This. is new; nonspecific." and we never heard anything of it til today. 

 

Anyone know what to expect with the effusion? Does it decrease his prognosis? It has obviously caused an extreme shortness of breath, fatigue, weight loss for the past 2 months. All side effects he reported to his oncologist who just said "it is the cancer"

 

Thanks again all  

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Tim,

What to expect with a pleural effusion? As you said, drained and the fluid will be examined by a pathologist for signs of cancer.  The radiologist reported a mild uptake in the effusion area and has expressed concern about malignancy.  Perhaps but I've had many PET scans with reported "mild uptake" that turned out to be something other than cancer.  

I would think it unusual to have a significant reduction in masses from radiation and adjunct chemo while developing a new metastasis in the pleural area.  The radiation had to have been concentrated in the right lung area.  So, we wait again for a path report.

He'll likely have Second Line treatment consisting of chemotherapy only.  The PET showed a significant reduction, not elimination.  But overall, the PET is a good report.

Stay the course.

Tom

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3 minutes ago, Tom Galli said:

Tim,

What to expect with a pleural effusion? As you said, drained and the fluid will be examined by a pathologist for signs of cancer.  The radiologist reported a mild uptake in the effusion area and has expressed concern about malignancy.  Perhaps but I've had many PET scans with reported "mild uptake" that turned out to be something other than cancer.  

I would think it unusual to have a significant reduction in masses from radiation and adjunct chemo while developing a new metastasis in the pleural area.  The radiation had to have been concentrated in the right lung area.  So, we wait again for a path report.

He'll likely have Second Line treatment consisting of chemotherapy only.  The PET showed a significant reduction, not elimination.  But overall, the PET is a good report.

Stay the course.

Tom

Thanks Tom! Your prompt responses here have been amazing. The Nurse Practitioner also discussed Opdivo today as another alternative for treatment. The wait goes on! 

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the news is encouraging.  As with most cancer treatment, managing side effects are often the challenge. You may want to check into additional palliative care (not hospice but supportive care) for your dad to help wtih fatigue, nausea, nutrition, physical therapy, pain management, etc...  If his treatment facility offers it, it's worth checking into and can help keep him strong while he "waits". https://www.caregiver.org/understanding-palliativesupportive-care-what-every-caregiver-should-know 

 Please continue to keep us posted as we are keeping you in our thoughts.

Best hopes,

KatieB

 

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Thanks for the reply's Katie and Tom! We FINALLY got the results of the biopsy and . . . . IT WAS NON CANCEROUS!!! A major relief for him and myself. It seemed to boost his morale hearing the good news. He continues to lose weight however. The Dr prescribed him Marinol (sp) back in April and he took it once and it worked well for stoking his appetite but he wouldn't take it again because it said it made him tired. I finally convinced him today that he MUST take it if he wants to continue the fight. He listened and took one right in front of me! He's stubborn and wants to fight without the assistance of medication. So no more appts for a month. Not sure what happens now. He had very positive response to chemo/radiation. I guess we just wait and hope it stays the same and doesn't spread or grow? Should I be proactive in procuring other treatment options? Like I said, we wont see his onc for a month. I feel like we could be doing some immunotherapy or targeted therapy right now. Thanks again guys! This has been one heck of a ride that I never imagined being on. I wish you all the best!  

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Tim,

I'd work on his appetite at this juncture.  He'll need calories to regain his weight and strength.  You might consider a consultation with a registered dietitian, especially one who practices with cancer patients.

My wife has a MS in dietetics and her prescription was for minty tasting foods and tart versus sweet.  Hence, her ideas were chocolate mint-chip ice cream and cranberry juice (with sugar). Carbs mattered but sweet tasting food tasted horrible.  The ice cream solution worked so well, Martha made homemade chocolate mint Oreo cookies crushed into homemade chocolate mint ice cream.

Stay the course.

Tom

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Yay for good news on the biopsy! As for what's next, it is a wait-and-see approach for most is us. Initially it drove me crazy. Shouldn't I be taking a drug or doing something to keep it from coming back? Super Doc said no. So now, I just move forward with my plans and ignore the cloud of uncertainty that follows lung cancer patients. 

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I'm happy to read your good news about your dad's biopsy! I hope he continues to get his strength back, and I'm glad for you and your family that this "heck of a ride" just got a lot smoother. 

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

 

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Hello all! I come bearing great news! For the first time in 9 months going to the oncology center, there was no weight loss but a GAIN! of 2 pounds! We'll take every pound we can get. On top of that, my father is feeling better. He's becoming more active, vocal, and his appetite is slowly growing. On top of all this, his oncologist and nurse practitioner said they were very impressed with his appearance and progress and that he should consider himself to be in "remission" for the time being. I never thought a time like this would come. Upon diagnosis, I imagined that absolute worse. My only thought now is to wonder if there is anything else I should be doing to help him combat the side effects of treatment or to contain the cancer further. All in all wonderful news! Thanks all for your support and kind words. 

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Well here I am again. At a loss of words. Had a CT done last week and the results are in. They are released via an automated process and open to interpretation by the patient and their caretakers. We have an appointment next week to review the results but I couldn't wait and phoned his doctor. He basically said the disease is advancing to the center of the chest but was optimistic and said we would discuss options next week. Other than that, his oncologist didn't really explain the results. Another forum i visited said that it was good in the sense that the disease is stable and/or slowly progressing. I don't know what to think. I see stable, stable, stable, and then progression. Any help, as always, is appreciated.  

 

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