Free to Breathe

Results of Meeting with Oncologist

Thank you all for your support and help! It is greatly appreciated!!

The yucky oncologist changed his tune somewhat and I got some answers. I suspect some of this is because even with the O2 tank my level was 88; they changed and put me on their O2 from the wall and the level did not change. He said this is because the mega dose of rads harmed my lungs. I am on O2 24/7 and probably will be for the rest of my life.

Now he thinks I should see a cardiologist to check for heart damage.

He compared CT scans and said the two larger tumors are stable and have not grown - wonderful news!

I'm a little confused about this one, but the reason he gave for not answering my questions about genetic testing and such is because they do not do it unless you are at least Stage 3. If that is accurate, then why did the 2nd opinion oncologist know that the EGFR is positive??

The scan showed that I did not fracture my ribs - apparently there is damage to the nerves and since it has been for such a long time, gabapentin was prescribed - I started it today.

The real message I walked away with is that doing the mega dose of rads was a poor choice since it seems to have done so much damage - sort of makes me wonder if he was even aware of the extensive rads on both breasts...

At least this time he spent time and listened to me. My questions are not answered because I wasn't state 3 or 4, but at least he took me seriously this time!

I could not have done this without all of your support and help - THANK YOU

Merry Christmas

Lauri-Anne

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Answers at last! Somehow I overlooked that your cancer wasn’t stage 4. It’s only recently that they’ve started testing with stage 3.

What strength gabapentin? I found that I did well with the 100mg but most drs start patients at 300. The first few days you will be groggy. Your body will adjust.

You may never know if that megadose of rads was necessary and, who knows, anything less may not have been enough to kill the Cancer. The thing I hate most about Cancer is all the uncertainties that accompany it.

There are a variety of canulas available for your needs and comfort

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Denzie, the gabapentin capsules start out at 300 mg once daily. I take it at night, so hopefully it won't make me groggy - this is Christmas and there are things to do!! I did ask why so high, and he said that is actually a low dose. Thank you for letting me know it might make me groggy - if it does I will put off any more of it until after Christmas - one week won't make that much difference.

I am wondering if the single mega dose was a wise choice when they could have spread it out, but it is what it is and the tumor is dead. Can't go back and change things now.

I am sort of frustrated that they don't do testing on stages 1 and 2. It just seems prudent to test regardless of the stage, especially given my history of 4 previous primary cancers...but again it is what it is.

All of this could have been avoided if he had just answered my questions in the first place!

You have been so helpful - Thank You for caring!!

I wish you the best through the Holidays!

Lauri-Anne

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Thanks for your kind words. As patients and advocates we need to push for reform. With some of the data they’ve collected they’re learning that some chemo meds won’t work if there’s a specific mutation or driver. They could save themselves hundreds of millions of dollars in Chemo treatments that don’t work and save patients months of time getting the right treatment and save them from unnecessary side effects if they have this info.

The data collection isn’t complete yet but it’s a line of study that excites me.

I would hope it would be Standard if Practice in a patient that has experienced as many primary cancers as you.

Have a wonderful holiday. I hope you’re surrounded by family and friends.

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You are such a bright light! If there is anything I can do to help advocate from home, please let me know - I think that standard protocols need to have specific exceptions. My case is a perfect example of why.

I worry about what is going to happen now that the GOP budget has been passed. Ryan and Rubio are already on the record as saying Social Security and Medicare, along with Medicaid and all social safety nets are on the chopping block. We need to fight back as a large group!

Thank you so very much!

Have a GREAT holiday season

Lauri-Anne

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It’s still in data point collection but it’s so promising.

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You are so right Denzie. Taking a shotgun approach is not only wasteful, but can be very harmful. Being able to zero in on the correct treatment for a specific cancer is vital to a good response.

Have a wonderful holiday. Look out 2018. Here we come.

Jean

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Anrean I am sorry to read you are at stage 2

As far as cabapentin is concerned my consultant at the pain clinic started me on 300mgs daily taken in 100mgs dosage three times a day for seven days then 200mgs each dose then 300mgs He had wanted me to take a daily dose of 1200mgs but I couldn't take that due to the increase in appetite and huge weight gain. It does help the nerve pain but it also is inclined to make concentration decline.

I was advised to take all doses regularly to have maximum effect. Side affects are a problem with this medication. I hope it will be of some help to you.

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Hi Thank you for the input! He started me out on 300 mg a day and I take it at night. So far so good. It hasn't changed the pain, but I am hopeful that with time it will. Not knowing anything about it, I asked why such a "high" dose and he told me that is a very low dose, so I'm hoping it works. I haven't noticed a change in appetite - still not hungry.

Hope you have a very happy and calm Holiday!

Lauri-Anne

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Finally some answers. It sounds as though this doctor could have done a better job of explaining why he could not or would not answer your questions even if he had to say I don't know. The mega radiation was ordered by a radiation oncologist and that decision falls on him or her, not your medical oncologist. I'm glad you will be taking gabapentin. It should provide some relief from the nerve pain.

The great news is that those two large tumors have not grown. Now you await the report from your second opinion. I hope you will get offered some new options.

Meanwhile, take as deep a breath as you can and relax to enjoy the holidays. May 2018 provide you with all sorts of opportunities.

Jean

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Dear Jean,

He IS the radiation oncologist, so he is the one who ordered the mega dose of rads - I suspect he didn't do his homework and know that I had large amounts of radiation to both sides of the chest already. But what is done is done. At least this time I got some answers!

Praying you have a wonderful Christmas that is filled with lots of love and happiness!

Lauri-Anne

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Thank you for your good wishes. I guess I misunderstood that your yucky oncologist is your radiation oncologist. Do you also have a medical oncologist and if so do they work as a team to provide your care? For the short time I had a radiation oncologist she was in constant touch with my medical oncologist. Once my lung cancer was seen, the medical oncologist took over.

Have a wonderful holiday knowing you are doing everything possible to help yourself.

Jean

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I do not have a medical oncologist. Through all my cancers, the only time a medical oncologist would get involved was to handle the chemo. It has been that way with all my friends who go there as well. The oncologist in charge is either the surgeon or radiologist. Is it different for you? How so?

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My medical oncologist is in charge of my cancer treatment and coordinates with my primary doc. I live in south central Wisconsin. It's interesting how differently things are handled in different areas.

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My primary care doc is the gate keeper for information, but when I call her about something she refers me back to the oncologists or the right physician. Fortunately we do a lot of this through email so I don't have to pay for office visits Yes, it is interesting how different things are. I'm in New York State.

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Strange.... as all my cancer treatment is coordinated through my medical oncologist who then forwards all info to the primary doctor. She coordinated my surgery with surgeon to remove the lung lobe, chemo, pulmonologist for biopsy of suspicious lymph node and referral to radiation oncologist for radiation.

I am also on 300mg gabapentin for nerve pain every 8 hours. I don't take it that often but found that at least 300mg per day makes pain tolerable and I don't get sleepy. Sometimes I increase it to the max dosage. Best wishes.

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