Update

[TJM]

It has been pretty quiet on the board the last week or so. Hopefully that means the lung cancer business is slowing down!

Had my consult with the radiation oncologist this morning. He recommended that if we decide to pursue radiation that it should be done after Chemo. Since there is no active tumor there is no benefit to doing it together considering how hard it is on the body. Head MRI was not read yet, but he said he couldn't see any issues when we reviewed it together...so I can check that box. Should mean I am NED.....

He also told me that large cell is really rare and the statistics on it are worthless.

Funny thing about oncologists I've noted. They are a relatively squeamish bunch. My first visit with the witch doctor he didnt even look at my wounds. I'll give the rad guy credit tho....he have me a thorough exam, but you could tell he didnt like looking at scars and sutures. He actually admitted it. Not sure why I find that humorous but I do.

Port tomorrow. Chemo next week. 

Oh....my wife had her knee surgery today. Just got done. Should be home soon.

Peace

Tom

[Rower Michelle]

Well cheers to bad stats! That works in your favor.  Welcome to the trailblazer club.  Your observation on oncologists is spot on. Those poor doctors, they aren’t doing this for the money.  They love science and are probably  the best defended of all the specialists.  I pray for my onc every day that he stays smart, abreast of the rapid developments. He writes with more empathy than he can verbally express.  Whatever, love and hugs come from the hippie doctors.  Carry on!! 

[Curt]

I always write my doctors odd behavior off as their being incredibly smart and even more socially awkward.  The more specialized they are the more they seem to be uncomfortable with interaction.   My primary care physician is great and very sociable, the others less.  
 

 

[TJM]

Postponed Port install. I am having a bit of an issue getting and staying on top of Constipation. Dont think it is a side effect because I'm not taking anything other than the occasional oxy. Really think it was the hormones from the tumor. Before surgery I struggled with diarrhea and never hard stool. Anyway....drive to port install over an hour and I am fixing to resolve my issue shortly. Better at home than in car!

I have been using Senna and M frequently but no major results. Any slightly stronger OC I could try? Also drinking lots of prune juice. I'll talk to Onc next week. Need to be on top of this before Chemo.

Port goes in Friday.

Peace

Tom

[Rower Michelle]

Try Alyssia’s Oatmeal cookie bites they are super high in fiber. Omega-3 supplements at 4 Grams. Two shots of olive oil one am and one OM.   Stay away from all dairy and red meat that should help.   E-stem acupuncture to the belly works too.  Keep up the water, minimum 64 oz a day, add three drops of tobasco sauce with some fresh Lemmon and stevia.  
Constipation is one of my primary side effects. Let me know if you need any more tips.  These should work.  

[TJM]

Thanks Rower. I'll give several of these a shot. No red meat a non starter though.....that is beyond my imagination. Next you'll tell me no potatoes or cheese!

Of what you suggest....which would you try first? I'm an Engineer, so am prewired to only try one variable at a time. That way I know what worked!

Peace

Tom

[Rower Michelle]

Try the olive oil shots first.  Literally greases the wheels.  Then try adding the “fire water” Tabasco/lemon next.   
Also walk the puppy a mile a day (multiple benefits there!). 
Hopefully a short term issue for you! 

[Rose Kaiser]

Tom,

Sorry to hear about your problem. I feel for you. Good luck with your port surgery. I can't imagine not having one for the treatments. 

Rose 

[LUNGevityKristin]

TJM, INA might be able to help.  You can get and get personalized nutrition advice.  Here is more information: https://lungevity.org/for-patients-caregivers/support-services/meet-ina-your-personal-intelligent-nutrition-assistant

[TJM]

Port is in. I was a bit more stressed for this procedure than I expected but it went without a hitch. Bigger procedure than I expected as well but I think it will pay dividends.  Great group at the KP Westside Medical. Gorgeous facility and very professional and efficient.

My pup is again acting like a puppy. I'm very relieved. Wednesday, when I was pretty worried he was not going to make it marked the low point in this journey so far. 

Now I get mentally psyched to go on full scale chemical warfare and kick some butt. I'm ready

Peace

Tom

[Jannysuzy]

On 2/25/2020 at 11:38 AM, TJM said:

Postponed Port install. I am having a bit of an issue getting and staying on top of Constipation. Dont think it is a side effect because I'm not taking anything other than the occasional oxy. Really think it was the hormones from the tumor. Before surgery I struggled with diarrhea and never hard stool. Anyway....drive to port install over an hour and I am fixing to resolve my issue shortly. Better at home than in car!

I have been using Senna and M frequently but no major results. Any slightly stronger OC I could try? Also drinking lots of prune juice. I'll talk to Onc next week. Need to be on top of this before Chemo.

Port goes in Friday.

Peace

Tom

I find that digestive advantage probiotic gummies combined with magnesium vitamins works very well.  Magnesium is like milk of magnesia.  Gross.  My mother used to give me that.  But with magnesium pills and the probiotic I haven’t had a problem.  I don’t take pain pills.  I used to take so many it took me 4 1/2 yrs to get off.  So this is going to be a challenge to have surgery or whatever and manage my pain. But boy do they cause constipation.  I do take medical marijuana and is the only thing that really helps me.  My mind and body.  I live in the moment so I don’t have to dread the future or regret the past.  I have a malignant atypical carcinoid tumor.  Was just diagnosed last week after a bronchoscopy.  I had  a random chest X-ray since i hadn’t had one in decades.  And there is was.  Shocking!!!!

[TJM]

Thanks for the tip Janny, I will check it out. I am finally on top of it and plan to stay on top of it. 

Peace

Tom

 

[MyWifeSCLC]

Tom ... I believe you indicated you start chemo this coming week. Is it Tuesday? Tue, Wed, Thu are the days that Ginabeth has her chemo. I also saw where you would get radiation therapy at the conclusion of chemo? What was the reason for delaying? 

Steve

[TJM]

46 minutes ago, MyWifeSCLC said:

Tom ... I believe you indicated you start chemo this coming week. Is it Tuesday? Tue, Wed, Thu are the days that Ginabeth has her chemo. I also saw where you would get radiation therapy at the conclusion of chemo? What was the reason for delaying? 

Steve

Steve,

Thanks for asking. I start Chemo on Thursday. The reason for the radiation delay is because I had surgery so should be NED. The fact there is no tumor to target means there isn't much if any synergistic value in doing them together. The Rad onc said doing them together harder on my system so no reason to go thru that. But he did think doing after Chemo would have a positive effect on the area radiated...as in no recurrence. Odds are pretty good I dont get through this without a recurrence (+60%). But he admitted to not having any experience with Large cell.

Have a second opinion at OHSU week after next. Main goal is to confirm a plan if/when the vile thing comes back.

Best of luck to your wife. May her treatments lead to clear scans and any side effects be minimal. I am sure she is stressing...I am myself, tho so far not to bad.

Peace

Tom

[MyWifeSCLC]

I sent an email to Jan Pappas of the national cancer institute asking about specialized treatment for my wife  if she relapses. (Info from Tom Galli) you might do the same. They might be able to design a treatment specifically for large cell. I sent all my wife's cancer info to them and hope to hear back.

Steve