SCLC - Limited - 1250768

pattys
Posts:14

My husband was diagnosed with sclc-limited in November, 2011. He has been through a lot of treatment and it was not always smooth sailing. He had problems with the chemo (cisplatin and etoposide) and had whole brain radiation. Today he saw his oncologist and the doctor said we can use the work "remission"! We are so happy. We realize "remission" isn't a synonym for "cure", but we are going to enjoy our happy times when they come our way. This website has been and will be a important part of this journey. Pattys

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Reply # - November 29, 2012, 07:53 PM

Dr West
Posts: 4735

I'm so happy for both of you! Congratulations! I'm happy we could help.

I know many people will be very happy for you and also very encouraged to know of one more person with lung cancer doing so well.

-Dr. West

Reply # - November 29, 2012, 08:05 PM

catdander
Posts:

Hi Pattys, I love a good story, thanks for sharing yours. I hope remission turns to cure with time. I'm not sure how long you must receive clear scans before he gets an all clear cure signal with sclc. nsclc is 5 years. I imagine it's a shorter time frame with small cell.

!!!All the Best!!!

Janine

Reply # - December 18, 2012, 10:23 AM

pattys
Posts: 14

Last week my husband got a good report on his brain MRI; however, he seems so tired, a little shakey, and just general lack of energy. I don't know if it is from all the treatment he has been through this year or something we need to worry about. I guess with the good scans, I thought we would see lots of improvement and, perhaps unrealistically, in a short time. Thank you for your comments. Patty

Reply # - December 18, 2012, 11:26 AM

catdander
Posts:

Patty,
I understand your worry. Hopefully one day it will fade. I think it's reasonable to think he could still be recouping from WBR. I understand that it can go on for months before returning to the old self. Don't discount stress and traumatic event depression. My sister has been in nursing since 1970 and between her experience as a nurse and patient as well as my mom and dad's experiences I believe the recouping time for treatments, including chemo/radiation, are much longer than are suggested by, dare I say most of our health care providers. In other words, I'd give it time and by activating a mantra of we are still healing he and you may be able to worry a bit less. It's all so very very difficult. GOOD LUCK!
Janine

Reply # - December 18, 2012, 11:38 AM

certain spring
Posts: 762

Sorry, I did not see Janine's post as I was writing this, but I totally agree wih her about the trauma of diagnosis and treatment.
And I too wanted to ask how long ago the WBR was done. I've never been so tired in my life as in the few months after that. But it did get better.
Some of what you describe just comes with the territory. I probably have about half the energy I had before all this happened. Adjusting to the new state has been difficult, for me and for my husband. It's frustrating and can be depressing. I am trying to train myself to focus on what I can do, instead of what I can't. I have found that it helps to focus on small goals that bring happiness without inducing frustration. I am sure you are helping your husband just by being there to love and encourage him. All best.

Reply # - December 19, 2012, 07:56 AM

pattys
Posts: 14

Thank you Catdander and Certain Spring for your responses. He finished his WBR at the end of July.

Patty

Reply # - December 19, 2012, 09:36 AM

catdander
Posts:

From what I've read he is still well within this being side efffcts of wbr.
But you should always check with his doctor when changes happen.
All the best
Janine

Reply # - December 19, 2012, 02:21 PM

cards7up
Posts: 636

Are they still checking his blood counts? His sodium could be off or something else causing him to still feel so tired. I've also read where it takes people a year to start feeling less tired. Wishing you both the best. Happy Holidays! Judy

Reply # - December 19, 2012, 09:01 PM

Dr West
Posts: 4735

It's still within the range of being under the shadow of his treatments, but it's getting far out for that, particularly if it isn't clearly improving. I'm very reassured to know that his scans show no evidence of disease, but I agree that it may be worthy of at least a good questioning of his doctor about whether any additional workup might be in order, especially if it might reveal some reversible issue in labs, etc.

-Dr. West

Reply # - December 23, 2012, 06:57 PM

pattys
Posts: 14

Thank you, Dr. West, for your response. I understood your response to be that it could be something else causing his symptoms. Well, you were right-on and it was a big something else -- congestive heart failure. He is in the cardiac intensive care unit. Pattys

Reply # - December 24, 2012, 08:44 AM

catdander
Posts:

I'm very sorry Patty,
I hope there is an expectation of recovery or stabilization from this?

Reply # - December 24, 2012, 04:03 PM

double trouble
Posts: 573

Patty, I'm sorry you're going through this but so grateful for Dr. West, and for the fact that you are such a good advocate. I will be sending positive thoughts and wishing for a speedy recovery. Please keep us updated.
Debra

Reply # - December 24, 2012, 04:50 PM

Dr West
Posts: 4735

Though I'm sorry to hear he's in the cardiac ICU, I'm happy for just about any answer that isn't cancer-related. Hope it's all readily reversible now that the underlying problem has been identified.

-Dr. West

Reply # - January 7, 2013, 05:36 PM

pattys
Posts: 14

On December 18th, I reported that my husband had gotten a good report on his brain MRI after WBR. Later I reported that he had congestive heart failure. As I was going out the door to pick him up from the hospital on December 24, the radiation oncologist called and said the radiologist had seen a hazy area on that brain MRI and would be referring him to a neurosurgeon. That MRI was done without contrast due to poor kidney function. Well, today he had another brain MRI and had to sign to get it with contrast. There is a brain tumor and he will have radiosurgery tomorrow. My husband has been so brave and hopeful, but, tonight, is very discouraged. I am so sad for him and am having trouble being positive. I worry what this treatment is going to do to him. He is already suffering from lack of concentration, problems with balance and some confusion. He is also losing weight. Trying to cope with the heart issues and the cancer is a lot.

I haven't thanked you all enough for responding to my posts. This website is very important to me and I am grateful for all of you. Patty

Reply # - January 7, 2013, 06:17 PM

laya d.
Posts: 714

Oh Our Dear Patty - -

I am so very sorry about this new development. I remember how floored I was when we first learned that my Mom had a brain tumor that needed to be operated on. My only advice to you is to stay focused on what is before you - - i.e., the brain surgery - - and not all the "what ifs" out there. The fact that the tumor is operable is a good thing. So, just concentrate on the fact that they are removing it and getting rid of it. You can deal with whatever happens next later. I know that this is so much easier said than done - - but just take baby steps for now. . .

I wish you and your husband all the luck in the world. . .

Please keep us posted. . .

Laya

Reply # - January 7, 2013, 06:44 PM

Dr West
Posts: 4735

Patty,

I'm very sorry to hear that. None of us can know what will happen, but I hope he and you can just take things one step at a time and know that his medical team and everyone here will be there to try to do whatever we can to explain and help and just be there.

Good luck.

-Dr. West

Reply # - January 7, 2013, 06:58 PM

Jazz
Posts: 279

Dear Patty,

Please don't lose hope. As Laya said, as difficult as it is, try to just focus on the immediate thing, and the fact that the tumor can be removed. Just wanted to send encouragement and wish you both all the best.

Jazz

Reply # - January 9, 2013, 12:55 PM

pattys
Posts: 14

Thank you everyone for your comments. The "one step at a time" advice is my new mantra. I did want to share the radiosurgery experience we had yesterday in case someone might be interested. We arrived at the hospital at about 6:30 am. There were 10 people who would receive treatment that day. The doctor came in and explained how the procedure would work. The patients were all given valium, and of course, there were several jokes from those of us who accompanied the patients about maybe we could have a dose too. The patients were then taken from the room one by one to have head rings put on and CT scans. There was approximately a 2 hour wait for the doctors then to plan each patient's individual treatment and then plan their order of treatment -- least complicated to most complicated. While we were waiting, the patients were given breakfast. The nurse came in later and said who would be first and who would be last. My husband was about in the middle. The thing we found quite nice was that we all sat around a table to wait instead of in a waiting room with the chairs up against the wall. The table provided a setting for the patients and family to talk and share their experiences. We all went home as soon as each patient's treatment was completed. I think my husband is in much better shape today than he was before the surgery. Patty

Reply # - January 9, 2013, 06:30 PM

Dr West
Posts: 4735

Great to know that he's doing better and that you're feeling more encouraged. I hope both of those trends continue.

-Dr. West

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