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A Plan - Finally!

JohnBinDC's picture
JohnBinDC
Posts: 91
Joined: Nov 2010

I had a terrific appointment at Johns Hopkins yesterday. I met with the entire team of 5 doctors, including the medical oncologist, radiation oncologist, thoracic surgeon, and two oncology fellows. They presented a plan to me that we are going to begin on Wednesday. The plan includes chemotharepy (Cisplaten (days 1+8 and days 29+36) and Etoposide on days 1-5 and 29-33, along with 5 weeks of radiation.

After this treatment, we'll check on the results, and, providing the results are good, I'll have VATS Surgery to remove the upper lobe of my left lung and a mediastinoscopy to clean up my lymph nodes.

This is all predicated on a scan I had yesterday, not showing any spread of cancer.

After the growth of my tumor being detected in October, it is great to now have a plan! I finally feel like I will be making progress and that feels terrific.

Just for info, I have stage 3A NSCLC

I did ask if I could bring hot dogs to be cooked during radiation, but my request was denied as they said hot dogs are not good for me. Maybe I'll ask about bringing asparagus to be nuked by radiation :)

I am excited to get started and cannot wait to move forward! This has been a LONG few months! Iam extremely pleased with the team approach at Johns Hopkins and the aggressiveness of their approach.

Best wishes to everyone as we continue to fight

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

Glad you finally have a sense of direction with your treatment. That is frustrating to wait, but so necessary.

Good Luck.

medi_2's picture
medi_2
Posts: 506
Joined: Aug 2009

Sounds like they're gonna fix you up 'ol boy!;)
I had the same cocktail.
Cheers!
Medi

z's picture
z
Posts: 1251
Joined: May 2009

This is great to have 3 drs and 2 fellows, looking at your case and coming up with the best tx plan. I had the vats, so when you get ready for that I will enlighten you of what to expect from a personal experience. Its amazing what the medical community can do these days. I was back to work after a month after the vats procedure. You have a great attitude and that is just as important as the tx plan. I wish you the best. Lori

JohnBinDC's picture
JohnBinDC
Posts: 91
Joined: Nov 2010

It looks like my excitement was premature. I just received a call from my oncologist and my scan that was taken yesterday shows new spots in my right lung (the large mass is in my left lung). My appointment for tmorrow has been cancelled, and a new biopsy will need to be tested to determine the exact type of cancer. It appears I will start Chemotherapy next week. This is very disappointing news, but I cannot let it get me down too far because I need to keep positive that treatment will successful. I can't help but think that the waiting time has cost a chance of curative surgery. Nonetheless, we need to continue moving forward as looking back is of no value to anyone.

Best wishes to all.

John

z's picture
z
Posts: 1251
Joined: May 2009

I hope that the spots in the right are just inflammation, but if not then the chemo could still knock them out and the future could still have a vats procedure in it. Theres a poster that her husband will have 2 vats procedures 1 on the right and 1 on the left. Now I was told that the lungs will expand by 30% to compensate for the loss of a lobe. Our bodies are truly amazing. I hope your biopsy will be good news. I wish you well. Lori

JohnBinDC's picture
JohnBinDC
Posts: 91
Joined: Nov 2010

Lori, Thanks much for the encouragement and the example you provided. Just ned to take this a day at a time and keep moving forwrd. I appreciate your comments!

John

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

John -

Sorry to hear that you're back on the roller coaster for another ride.

Speaking only of my situation, we too originally thought my wife was stage 3a. Then we were told 3b. We were pretty close to starting on chemo and radiation when we found the spots in her spine and we were upstaged to stage 4.

Here's my take... There was plenty of cancer in her spine before it was large enough to show up on the scans. So if it had not shown up on the scan and we had went with smaller doses of chemo and radiation... or in retrospect, surgery, we would have been setting ourselves up for failure. Sure the main tumor and lymph nodes would be taken care of, but the cancer would be running rampant other places, and her healing time would have precluded her getting the much higher doses of chemo.

I would suspect that many people endure surgery or curative doses of radiation, when it is already outside the area, just not detectable. Thus a treamtent that causes more harm than good.

The chemo in my wifes case is working, and I am much happier to have a correct diagnosis and action plan than to hear, "Well, we probably should have taken one more look before starting. Do you have acupressure wristbands. "

But it still sucks to get back on the roller coaster.

JohnBinDC's picture
JohnBinDC
Posts: 91
Joined: Nov 2010

NayPaul,

Thank you so much for your insight. You make some excellent points, especially about treating an area when another area has undetected cancer cells running rampant. So, in hindsight, it is likely good that that the surgery will at least be postponed and maube chemo will be the option that will work best. Thanks again.

cabbott
Posts: 1046
Joined: Aug 2006

I have read more than one story where the chemo reduced the size and number of tumors so that surgery was an option later. So don't give up hope! I had surgery with VATS back in 2006 and still see the docs at Hopkins. The nurses are outstanding. Well, so are the doctors, but the nurses are the ones you see most often. They are great at answering questions and do their best to make you comfortable. Don't be shy about calling them whenever you need them. The folks on this site also are good at helping with day to day problems that sometimes crop up.

By the way, I'm glad to hear the VATS procedure is still available at Hopkins. Just in case I may need it on the other side. . . my original surgeon moved away awhile back and I am now seeing someone that is great at research but does "regular" thoracic surgery. If you have to have surgery, I greatly recommend the VATS surgery. Recovery is much faster and side effects are less. I have had both one VATS surgery and one modified VATS surgery on the right side. Since I had the chance to compare "bandaide" incisions with a 4 incher, I can tell you from experience that smaller is better! Mind you, the nurses tell me that since the two operations were within 2 weeks of one another the drugs probably slowed me down more during the modified VATS. But I still prefer the VATS and think it is a better option when possible. I will probably not be a candidate for VATS on that side in the future (so I was told back in 2006). However, I have learned to take one day at a time and who knows what they will be able to do should I need surgery in the future. Every day there are new discoveries both in drug research and in surgery advancements. So who knows what will be possible next month, next year, or in five years or whenever I need help again!

The same is true for you and your treatment. Advancements are so quick that the outlook for cancer patients can totally change from one month to the next for the better. You never know what great discovery is just around the corner. That's why you go to the best place you can and talk to researchers on the cutting edge. So take things one day at a time.

By the way, it came as a bit of a shock to me to learn that cancer takes a long time to grow and develop. By the time I was diagnosed, the doctor said I had probably had cancer for several years. I was worried that ignoring getting it out for even a few days would make a terrible difference. In fact, when I was first diagnosed with breast cancer back in 2002 (yep, I'm lucky twice!) I wasn't sure if I had a month or a year left to live. I was seriously scared! The doctor insisted that most lung cancer takes weeks to months to double. One cell doesn't show up on a scan. Neither do two, four, sixteen, or even twice that. It takes lots and lots of doubles before even stage 1 cancer shows up. The doctor said I may have had lung cancer for two to eight years before it finally showed up in the first scan. So the few weeks I had to wait to see him weren't worrying him and shouldn't worry me. I worried anyhow and looked up information about cancer doubling times. Of course, it showed he was right. Some cancers are more aggressive than others and none of them should be totally ignored. But a week or even a month waiting for an appointment doesn't make a hugh difference with lung cancer.

JohnBinDC's picture
JohnBinDC
Posts: 91
Joined: Nov 2010

Thank you so much for your encouraging post. I agree wholeheartedly that we are in a everp-changing world regarding cancer treatments. I am also glad that you passed on your experience with Hopkins, as I believe they are the best in this area.

Will keep up the fight and hope I can pass on some good experiences to others as you have done for me.

Best wishes always

John

woodbinemurf
Posts: 3
Joined: Sep 2010

Hi John,
I apologize in advance if two of these notes are sent, I drafted one a few minutes ago and I have no idea where it went.

I had the VATS surgery at Hopkins in Sept 2010, and it went very well and I recovered quickly. I was detected early at stage 1a and they removed the right upper lobe. I am in a trial at Hopkins, and spend about 15 early mornings here per month, and am available to meet with you and talk should you want additional info about the VATS on any day that our schedules include mutual times at hopkins (or other times as well)

I notice from your picture that you are a runner or jogger. I ran my last 5k two days before my surgery. I have walked two race 5ks in the last 30 days and while finishing close to the back of the pack in the low 40s, I feel a great sense of accomplishment. (not that I was any thing faster than a turtle when I ran prior to the surgery)

I agree with the previous comments, the Drs are great, the nurses across the board are wonderful and very knowledgeable. My experience with everyone from the Thoracic surgery, to recovery, to the oncology groups have been very positive.

I wish you the best as you ride the roller coaster, and feel that you are dealing with the right place in Hopkins.

frankie310
Posts: 17
Joined: May 2010

Sorry about the disappointment but sounds like you have a great attitude and that makes a HUGE difference . Wish you the best outcome possible sounds like you have a great team . A teaching hospital is the best place to be.

Best wishes Jean

cb girl's picture
cb girl
Posts: 56
Joined: May 2010

hi john, I am the woman that has the husband who has tumor in his RUL and in his lower left lobe. He was going to have surgery in May, but a biopsy found cancer in the lymph node so the surgery was discontinued. After 18 weeks of chemo- gemzar/cisplatin- his tumors had shrunk and we were headed for radiation next when the rad onc sent us back to Moffitt cancer center for a surgery consult one more time just to be sure. New surgeon, different aggressive philosophy than the first surgeon in May. Jan 24th my husband will be having the VATS done to remove his upper right lobe and then as soon as feasible they will do the VATS on his lower left lobe. It is quite the roller coaster ride, but we are optimistic because what else can you do. I wish you the very best
Tracy

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

I'm sorry I missed this post and your update - just want to tell you, you are in a great place and I just know it will go well for you. I also had a very similar dx - tumor in one lung, small ones in the other, lymph nodes "involved", and never had surgery. Same first-line treatment, Cisplatin/Etoposide + radiation. In my case the docs couldn't do surgery because my lungs are too fragile from years of smoking/emphysema. In your case, as others said, you may still be eligible for surgery after chemo.

Make sure the docs save some biopsy tissue to check for EGFR, ALK, and whatever other mutations arose when I wasn't paying attention =)

Keep your humor, don't let the surgeons cut it out!
stayingcalm

JohnBinDC's picture
JohnBinDC
Posts: 91
Joined: Nov 2010

Thanks for the note. I plan to not let anyone cut out my sense of humor because I don't know what I would do without it! I did ask my medical oncologist to be sure my tissue was checked for EGFR and ALK. ALK because that is one requirement to be eligible for the Crizotinib clinical trial.

Biopsy is tomorrow and after those results, I hope to get moving on a treatment plan. I am not sure if it will be just chemo or chemo with radiation. I was hoping for some radiation as I thought I could use that to heat up water for coffee while I was being lit up. I also thought I might be able to disable the safety switch of my microwave so it would work with the door open. That way I could do radiation at home on the cheap :).

Have a great day and thanks again for your encouragement.

John

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Because of your words, I smiled today! My best wishes for an answer and start of treatment.

Lucy

z's picture
z
Posts: 1251
Joined: May 2009

I hope the biopsy will direct the tx plan in the best way possible. You have a great sense of humor. I will be thinking of you and sending positive thoughts. Lori

TPring
Posts: 3
Joined: Feb 2011

Hello I am a new comer.
My dad has stage 4 lung ca. just starting radiation this week. just read all you postings and wanted to see how you where doing.

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