Update on Whiteheadswife - 1247722

whiteheadswife
Posts:9

Good Morning all,

Just popping in with an update. We finished chemo, I round short in April. The side effects were debilitating to me, although I kept working, and pushing through. I have been seeing a Neurologist for the neuropathy in my hands and feet, trying everything under the sun to help me get through. We started with neurontin, moved on to amitriptilyn, and a cream from TPS to help. I could not take the ami, because I could not dedicate a full 12 hrs sleep with work and home hours. My latest visit, he had decided to take me out of work and place me on temporary disability for 6 months. Although tomorrow will make a week, I am already losing my mind! I very much enjoyed being back at it, and the house can only stay so clean now!

My hands seem to be improving somewhat, and I am atleast not having the case of the "dropsies" as much. My feet on the other hand....they still cause considerable amounts of pain. Being on them for more than a few hours is not in the cards, unless I want to torture myself. During this adventure, I have seemed to gain about 30 lbs or so that I would LOVE to drop. I blame it on my "I am going to eat what I want, when I can, because I may not be able to later" attitude during treatment. When I was feeling well enough, I ATE
IT
I had a follow up CT not long ago, and at the same time was lobbying to have my port removed. The surgeon refused, as on the scan was a 3mm of something, unknown at this time. So we had a PET and it showed 1.9 ? And it was inconclusive. So here we are waiting until October for a repeat scan to see if there has been any changes. With my KRAS mutation, and the "moderately to poorly differentiated" classifications on my biopsy report, it makes me personally nervous. Should I be? Has anyone else had this diagnosis or similar? I want to hold out for NED of course, but who of us whom have faced this demon, can be continuously hopeful for the best? I try as hard as I can to be, but somedays, the negative wins the game

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Reply # - September 6, 2012, 07:40 AM

catdander
Posts:

So glad to hear from you, not so much though about the neuropathy. Have you tried lanocaine patches or capsaicin cream http://www.mayoclinic.com/health/drug-information/DR600303 . You must really be an incredably strong person to have gone through everything you have with children and a soldier husband, and still be ready to go back to work after one week off. My 30 pound weight gain I understand is quite different (buying everything I could think of that D might eat but didn't) but I did know what was going on and I said what the heck I'm under stress. I've gotten half of it off. It's ok and will come off when it comes off.

What you've discribed about the 1.9 something is that SUV, uptake (cellular activity) or the size of something?
Either way the number is quite low and could very possibly be inflammation from just about anything you've gone through. It could be scar tissue. a 1.9 suv is well within the normal range your body normally issues to fight a small infection.
I think your questions are also in the very normal range and most people go through a similar trend, even when trending toward cure. That is what we are hoping for, right?

I could use a reminder if you would about your dx and treatment up to now. Not just for me but for the doctors who may be asked to answer questions or people looking for info about similar cases. A signature that shows up at the bottom of your posts would be easier than rewriting it everytime you have a question. (hopefully they are all about NED and follow up boring scans.) steps to do this are,
Click on your user name on the left of your posts "Whiteheadswife". That takes you to your "forum profile".
"Edit you Signature" and click submit.

Please keep us posted and good luck to you and your family,
Janine

Reply # - September 6, 2012, 09:12 AM

Dr West
Posts: 4735

I presume that the 1.9 refers to the "standard uptake value", which is the unit of metabolic uptake. Indeed, that's really a pretty low/indeterminate level that doesn't say much, but then PET scans can't really reliably read anything on nodules that small...

I can't really answer the "should I worry?" question. You know nobody can tell you that there's nothing to worry about after someone has undergone lung surgery. Recurrences do happen. Nodules, especially small ones, don't indicate cancer, but they're worth following and of some concern in anyone, especially in someone with a history of active cancer. I think the best course is to see what the upcoming scan shows and take it from there, knowing that if it looks good, that's wonderful, and if it doesn't, you'll be able to make a plan with the people there and the online community to help provide backup support.

Good luck.

-Dr. West

Reply # - September 7, 2012, 01:07 AM

certain spring
Posts: 762

I am so impressed that you kept working - it must be very frustrating to be told to stop. Can you plan some holidays? Very good for morale.
A number of people have found Lyrica useful for neuropathy - but I am sure you have run the gamut of options. Very best.

Reply # - October 7, 2012, 07:21 PM

whiteheadswife
Posts: 9

Just a quick update.

I had my CT scan this week. Per usual, there is no patience level in this house, so we got the report the next day. The nodule is still there, unchanged. The Radiologist stated in the report, that he suggests another scan a year from when it was originally found, (which is 7/13) unless clinical reasons deem otherwise. So, that is good to hear. We meet with the Pulmonologist on Wed and I am assuming her plan of action will be very similiar if not, exactly as suggested.

I am thankful as ever, to know the nodule has not changed at all in 3 months. Maybe we can move on for a change? Quit stressing so much? That would be wonderful. Lord knows, we have enough other things happening here!

I am also going to lobby the Surgeon to get my port removed. Unchanged nodule = ok to remove...atleast in MY book! lol

Hope everyone is fairing well! ::hugs::

Deborah

Reply # - October 7, 2012, 10:20 PM

cosmo72
Posts: 37

Hi Deborah That's fantastic news for you ! My nodule has remained unchanged since 2010 hoping that its scar tissue now ..keep on keeping on :0)
Lesley

Reply # - October 8, 2012, 12:52 AM

certain spring
Posts: 762

Deborah, hope you can relax a bit now.
Cosmo72, good to hear from you - I have been missing the GRACE Australians!

Reply # - October 8, 2012, 02:41 PM

catdander
Posts:

So great to hear of the continuing excellent news. I don't know why they would want to keep that port in. I'm reading YOUR book on getting it out. :)

Janine

Reply # - October 8, 2012, 07:43 PM

Dr West
Posts: 4735

I'm so happy to hear that good news for you. Please DO keep us posted. We want to help when people need it, but the successes are very sustaining and give everyone hope.

Here's to more good news!

-Dr. West

Reply # - October 20, 2012, 08:39 AM

whiteheadswife
Posts: 9

Well, the surgeon and pulmonologist have agreed, let's get this beetle out! So off I go Monday morning to get it removed :)

Happy Dances around here!!!

In the interim, I saw my Neurologist and he still has me out of work. He is not sure that the nerve endings will ever completely regenerate, so we are in the "having faith" stage of all of that. I WANT and NEED to get back out into the real world. I hate being at home every day :(

I applied for disability, full, because I was told it can take 6 mos from when you are "accepted" if you are, to recieve benefits, and with things as tight as they are now on "temporary", I don't need to stress about the wait.

I did however learn in the process, that when I got married moons ago, I should have done the right thing, instead of being lazy, and change my SS card :P So now I have to do that this week. I attempted friday, but I did not have my divorce decree, and they needed that. How RUDE LOL

Hope all are well!

Reply # - October 20, 2012, 10:18 AM

catdander
Posts:

You're talking about taking the port out right? The beetle. Congratulations! I'll dance for your beetle.
It's good to know you are moving forward with disability. My husband went through the process and was quite smooth.
I'm so sorry you're not able to shake the neuropathy. Maybe eventually. Disability works much better today than it did in years past where you either had full coverage or nothing. Today you can ease back into your full activity level with some leeway to move one way or the other as needed.
Janine

Reply # - October 20, 2012, 11:35 AM

Dr West
Posts: 4735

Good luck with both the upcoming procedure and the potential improvement in your neuropathy. Many of my patients improve over the course of many months, so there's certainly reason to hope things will get better.

-Dr. West

Reply # - October 21, 2012, 07:52 PM

aunttootsie001
Posts: 324

Deborah, so sorry you had to go thru that stress! Only people like us can truely understand how our minds work during those times just before a Scan and then after you get your results! I like you want to get my Port out. It has been in over a year and haven't had a Chemo since Nov. 10th 2011. So Happy for you! Will keep you in my prayers! Keep us posted!

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