Some new Symptoms have arrived

[Carleen]

Keith has a doctor's appointment on Tuesday. We are wanting to talk to the doctor about starting up low dose chemotherapy. Keith hasn't had any chemo since 9/23/03, and I am getting pretty worried about going this long without treatment. He did start taking sandostatin at the beginning of January, but that is primarily for carcinoid symptoms. He is taking that because we heard that sandostatin sometimes has the added benefit of stabilizing tumor progression. He injects himself 3 times a day.

I was really hoping that this Sandostatin would work, as Keith really isn't looking forward to going back on Chemo. He just grew all his hair back

Anyway, when we were in New Orleans, we talked to the doctor there and overall Keith was feeling great, and the doctor suggested that we could try the Octreoscan treatment. However, this is a clinical trial, and he suggests doing this in the break between doing chemo rounds. While we were in the Big Easy, Keith and I had a great time. If it wasn't for the appointment, there would be nothing to distinguish it from any other vacation. We ate like pigs, we stayed out til dawn and laughed, walked for miles shopping and saw all the sights.

About 3 days after getting back home, Keith started complaining that his right arm keeps going numb. He is also having simultanious hot and cold flashes, where his skin feels very cold to the touch, but he is sweating, and he is hot and cold all at the same time. Now, a week later, and he says he is exhausted all the time. He comes home from work at 4:00 and wants to sleep and rest and has no energy for anything.

I'm scared. Is this the cancer? Does it change things like this so fast, without warning? Are these common symptoms? Keith is really scared too. He told me he thinks the cancer is growing.

We called his oncologist about these symptoms, and he called us back and suggested that the hot/cold flashes were just tumor fevers and the numbness was probably carpal tunnel. That just doesn't sound right to me; carpal tunnel coming on without any prior pain. These are all things I want to talk to his onc about on Tuesday. But, as you all know, waiting is a nightmare, and I want to know now. So, I'm asking all of you, my extended family, whether anyone has experienced these things. Teetlee, could these be side effects of the sandostatin? My mind keeps thinking..."numbness" = brain mets. But I am praying so hard and having some serious talks with God, asking him to please not let this be the case. I know that there are normal life illnesses that we are subject to, but once you have LC all aches and pains immediately get attributed to the cancer, and it is too hard not to fear that above all other possibilities.

If anyone has any similar experiences or knowledge, good or bad, please give it to me straight. We can and will fight any battle, we just need to know who our foe is.

Love you all,

Carleen

[shelliemacs]

carleen,

when my mom got brain mets. her left arm was numb and she could not make a fist anymore with her fingers.

she did not have the hot/cold flashes though. some brain mets show no symptoms either so it could be NOTHING too.

maybe he just has a flu.

[mhutch1366]

Oh, Carleen,

My heart goes out to you....

I had the hot and cold stuff with the tumor, continued for a while after the tumor was removed even...

Fatigue, that I remember well also. I turned out to be anemic, which was a large part of it.

The loss of function/numbness I had also, but for different reasons. Remember, for carpal tunnel, even fluid backing up can be enough to set it off (ever heard of pregnancy related carpal tunnel?).

You could work yourself into quite a state, OR...

you could take it as it comes and try not to borrow trouble.

It's not absolutely necessary to assign everything a meaning...

Hang tough and try not to make yourself too crazy until the appointment. Take it easy, and take a page from Keith's book -- take a nap.

Try to have a nice weekend,

XOXOX

MaryAnn

[sharyn]

Carleen - I can't say my Dad has hadany experience with the symptoms Keith is having - but I will tell you something.

You sound so much like me and I know how you feel... You are desperate to get an answer because your mind is working overtime and you are thinking the worse. PLEASE, and i know this is not easy... try to save the worrying for when you have something to worry about. My family always tells me... Sharon, Why do you look for trouble? It will find you soon enough, don't go finding it. For three years now before Daddy goes for his Scans (every 3 months) I stress for at least a week before and a week after thinking "this will be the time when something is not good" And for three years now, I have wasted alot of energy. Yesterday, we went out for lunch and he didn't eat as well as I thought he normally does and I found myself not able to eat because I was so worried about why he wasn't eating???!!! Little did I know that he had a huge breakfast only 3 hours before.... I know I am rambling a bit, but basically what I am trying to tell you is.... Take a deep breath... and if trouble does hit.... you will be stronger to deal with it... (I personally have a good feeling about Keith). Please keep in touch.... Love, Sharon

[karenl]

Hi Carleen

I'm sorry, I don't have any information about the symptoms Keith is experiencing. Just wanted you to know that I am thinking of you both and hoping for the best.

Karen

[Andrea B.]

Dear Carleen,

Sounds like you had a beautiful trip, but I am sorry you and Keith are worried by these new symptoms. How can we not worry constantly about our loved ones. My mom was just complaining of feeling "out of it", like her brain isn't clicking. So what is my first thought...oh please not brain mets! My mom did have numbness in her hands and it turned out to be carpal tunnel. She had no prior symptoms and all of a sudden her hands were going numb (she also has arthritis), she had surgery and it helped to relieve the numbness. In addition, she has had the hot/cold flashes...but not sure what to attribute these to. I am praying that none of Keith's symptoms are related to cancer. You both are always in my thoughts. I am sending you a hug. Blessings to you.

Andrea

[J.C.]

Carleen,

I do not have lung cancer, but one day my arms were fine, the next day,

cold sweats and my right arm got mumb, next day my left arm was

useless, carpal tunnel syndrome, refused operation and took Vit B2

and Vit B6 100mg a day of each, that was in l998, my both arms and

hands are A1 as long as I keep taking the 2 Vitamins.

Hope all gets sorted out soon.

Prayers going in the meantime.

Hugs

J.C.

[David A]

Hi Carleen , I have an intimittent pain and numbness in my arm from time to time, usaully when I overuse it, had a MRI and saw spine specialist they think it is probably carpal tunnel syndrome, and doesn't surprsie me as I' ve worked with my hands in production jobs mosst of my life and my hands have taken lots of abuse. Not sure I'm of any help, but if I were you and Keith I'd want it checked out.

So glad that you too had a good time in the big easy, important not to let our lives stop when we encounter cancer, fun and laughter helps tons.

Please know that you and Keith are in my prayers, tell him to get busy on the hot rod as I might be in wisconsin for a ride in it, I have to show Dave G what a real dog looks like!.

DavidA

Ps glad we have the same score on the penguin baseball, unless you've had to surpass me!

[SandyS]

Carleen -

No great input to give you - but know that my prayers are with you and Keith for only good things.....

Hugs and prayers,

SandyS

[kimblanchard]

Hi Carleen,

Bill had numbness in his right hand and fingers at first and then his arm. We definitely believe it was due to the brain mets later found. This does not mean it is the same for Keith, but I would always check every possibility out. After all, doctors have been wrong about many things for many people on this board. They are giving us their opinion (valued of course, but not always 100% correct). If it is a brain met, it can be successfully treated.

I pray you find out what is happening and that it is nothing serious.

Blessings to you both,

Peg

[bobmc]

Ohh Carleen;

My heart also goes out to the two of you, and yea I can tell ya that about a month before I was dx'ed with the brain mets I also felt something was not right. It was some back pain, but more important I was losing my appitite and also getting very fatigued and simply not feeling right , just sluggish if you know what I mean. Now, Keith could have other issue's but I think the important thing is to have it checked as your doing.

My doc called for the scans, had it checked and found the mets early. Interesting though, they said none of my complaints would have been from the mets. I don't agree but I still have a " hot spot" that must be checked.

As others have said it is treatable and beatable. I'm 17 of 20 WBR treatments done and it's not too bad to get through. So, Please, relax a bit, breath and try not to think so much. We have little control, much acceptance to do and continue to keep on keepin on!

Know your in my thoughts and prayers!

God bless and be well

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

MRI's taken 12/18/03 - 2 brain mets found- named em Frick & Frack

PET taken 1/5 - hot spot in mediastinum May be cancer??

"Absolutely insist on enjoying life today!"

[Lisa O]

I know that medication changes can be so significant. Neuropathy (including numbness) headaches, fatigue... can be caused by even something so simple as antacids and allergy medications. I will say some prayers for you and Keith. I hope and pray for the easy fix.