Hi All,
My 57 year old mother-in-law has just been diagnosed with SCLC with brain metastases. Interestingly, her only presenting symptom was a tongue twitching that started just over a month ago. That work-up led to a head MRI (at least 9 metastatic brain lesions) which led to chest and abdomen CT (small left upper lobe tumor and mediastinal adenopathy). Her pathology from needle biopsy revealed SCLC. She is starting whole brain radiation therapy next week (total of 10 treatments lasting 15 minutes over 2weeks). She will then begin 4-6 rounds of chemotherapy (we don't know what kind yet..only that she will have 3 days of treatment then 3 weeks off then repeat). She is young and otherwise completely healthy. She has no symptoms of lung cancer at all. Her brain symptoms got slightly worse, with full face spasms happening lasting about 4 minutes, but now she is on decadron and that has calmed down. This is all new for us and I am looking for any advice. I really do believe in the power of a good attitude, a good support system, and taking care of your body as far as proper nutrition, etc. I am going to start taking her to relaxation yoga, if nothing else to help relieve stress. I am looking for any nutritional recommendations to boost her while she is undergoing chemo. I am also looking for any supplement recommendations. I read that some supplements can interfere with chemo, so I am looking to avoid those. I read some information about AHCC (some kind of medicinal mushroom compound)..does anyone have any experience with this? I have been giving her Mona Vie just to boost her vitamins/antioxidants before she begins any treatment. And most important of all, I pray every day. We all pray. She has an extensive network of family and friends praying for her survival. She was told without treatment, her prognosis is a few weeks. With treatment, her prognosis is 9-12 months. I just can't believe it..looking at her one would never know that this is killing her. She is beautiful, strong, courageous and I am really hoping she outlives the odds. She is a special lady and we are not ready to let her go.

5/24/12 - First episode of tongue twitching
6/8/12 - Head MRI/MRA: 9 metastatic brain lesions
6/15/12 - CT chest/abdomen/pelvis: small left upper lobe tumor and diffuse mediastinal adenopathy
6/18/12 - Bronchoscopy with biopsy: inadequate tissue sample
6/29/12 - CT guided needle biopsy: SCLC

Sally take a look in this forum and you should find lots of info .. Lose the Mona Vie cause most here agree not really worth it I think.. Try lots of red fruits and green veggies, Fish oil possibly and also try soups with a cream base because the fat content is better right now to keep keep weight up... this forum should help you a lot !! clink on link .

viewforum.php?f=67

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Thanks Randy..lots of helpful info on that forum..good to know about the Mona Vie..we will ditch that. I read a lot of positive things about AHCC online including a study done t Texas MD Anderson center stating it has no interactions with chemotherapy so we are going to incorporate that along with a lot of the superfoods mentioned on this website.

Just wanted to send a welcome to you and my positive thoughts for your mom.
I would keep on the lookout for side effects, extreme fatigue, symptoms of dehydration, low blood counts, etc...

Keep posting and please keep us updated. We are all here for you,

HUgs,
KatieB

_________________
- Katie Brown, Co-Founder and Director of LCSC-

15 yr cancer survivor.

"Any of us who have experienced the cancer journey- and survived it-
have an obligation to make the path clearer and aid those that come after us."
- Lance Armstrong

In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007
my parents are together in heaven


facebook www.facebook.com/lungevity

Thank you Katie! She is halfway done with her radiation and will begin chemo 7/31. I will keep you posted.

Hope her spirits are up and doing good!! glad to hear good news. Keep Fighting the fight!!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Mom has completed whole brain radiation (10 treatments) and began chemo today. She is on the following regimen: Day 1=Carboplatin and VP16/ Day 2 and 3= VP16.. Repeat every 21 days for a total of 6-8 cycles. She is getting decadron and zofran with treatments and is on allopurinol to aid in clearance of chemo. She is taking AHCC as a supplement. She responded really well to the radiation..twitching is gone and speech is completely clear again. She is suffering from daily headaches though, which respond well to NSAIDS. This may be a side effect of radiation. She was very emotional while on high dose decadron, but this has gotten much better since it was weaned off. Her spirits are INCREDIBLE! She is determined to be positive and productive. A few weeks ago, she was sent an angel in the form of a cancer survivor named AJ.. He was riding his bicycle past her house and happened to stop right in front of her to adjust something on his bike. He somehow struck up a conversation with her and told her all about his battle. He is currently training for a triathlon. He discussed all his ups and downs. He was INSPIRING! She has been very positive ever since meeting him. I thank God for putting AJ in her path. It has truly made a difference in her outlook. She will be having repeat CT scan after 3 cycles to assess progress.

_________________
My Story

http://lungevity.org/l_community/viewto ... 47&t=40558

http://lungevity.org/l_community/viewto ... 47&t=41979

Hi Dawn,
Thank you for the great info. I checked with Mom's oncologist regarding the supplement and she said it was okay. I'm pretty sure mom takes ibuprofen daily. I will add a multivitamin as you suggested. I forgot to mention that she already had thrush..used nystatin to swish and it has cleared up. She tolerated 1st round of chemo well. She had some fatigue, but otherwise she's okay. Her biggest complaints are related to her radiation I think. She has severe scalp burning/itchiness. She was using cortisone cream. She actually told me today that she tried hemp lotion and it worked great. Her other problem is itchy ears. She is cleaning her ears with peroxide on a qtip and then applying cortisone cream. I appreciate your help. Thanks for the great advice! Mom's oncologist said the first round of chemo is the worse and it gets better from there..I hope she's right

Mom has finished her radiation and all six rounds of chemo. She developed an acute short term and long term memory loss in the last two weeks after several weeks off from treatments. She is very weak..still able to walk slowly but needs help with any stairs or long distances. She has an appt tomorrow with oncologist to reevaluate other options. No more radiation due to previous WBR and the presence of multiple growing lesions. She is now on Decadron 4 mg four times/day. Not really sure how the progression will manifest beyond the current symptoms. Wish us luck and pray for her peace and comfort.

prayers for your mom (and you) continue. I know this is a hard road to walk along with someone you love.

We continue to be here for you.

Hugs,
KatieB

_________________
- Katie Brown, Co-Founder and Director of LCSC-

15 yr cancer survivor.

"Any of us who have experienced the cancer journey- and survived it-
have an obligation to make the path clearer and aid those that come after us."
- Lance Armstrong

In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007
my parents are together in heaven


facebook www.facebook.com/lungevity

Went to see the oncologist today. She stated that not only have the lesions in the brain grown, but there are several new areas. She also stated there are now areas on the adrenal glands, spleen, and multiple lymph nodes in the chest. Surprisingly, she only has neurologic symptoms..her breathing is great! Mom was given two options: do nothing and enjoy the remainder of her time or try another chemo. It seemed pretty clear that the oncologist was uncertain whether or not the chemo would even be effective on the brain lesions. She isn't a candidate for any more radiation..the risk would not outweigh the benefit due to her previous WBRT and extensive disease. She is so weak and so forgetful. I really feel at this point that the side effects of the chemo (infection risk, weakness, nausea, diarrhea, etc) will destroy her quality of life. She seems content right now..she smiles and laughs and although she is forgetful, she isn't bothered by it most of the time. If the oncologist told us the chemo had a good chance of penetrating the blood brain barrier, I would be all for it. Unfortunately, mom doesn't have enough cognitive awareness to make a decision. She relies on all of us to guide her. I had many conversations with her and am very close to her. She didn't want treatment from the beginning, but when she was given weeks to live back in July, she decided she had some unfinished business, and underwent chemo/radiation. She responded very well to the initial treatment. However, she is only two months out from her last round of chemo and the lesions have all grown significantly. I am so torn..I know in my heart that she would want to just enjoy her time with her family around her and not be sick any more. However, a couple of her children said they are not ready to let her go and therefore want to try the chemo. She is not as healthy as she was last summer when she first got treated. She has lost 30 lbs, barely eats, can barely walk, and has fallen 3 times in the past 3 weeks. I feel like some family members are making decisions for selfish reasons, but I don't want to be blamed for doing nothing. Her husband just wants her to be comfortable. He and I are her health care proxys. She chose us because she knew we would be able to honor her wishes when the time came. Does anyone out there have any experience with second line chemo for the treatment of brain mets? Am I being unreasonable by not giving it a chance? I just don't have the heart to see her go through all those side effects without any reassurance that it will benefit her. I feel should should be surrounded by her loved ones instead of limiting contact due to low white blood counts and infection risk. My heart is breaking. Please share any thoughts.

If you know in your heart and mind this is what she would want--and her husband is on the same page, then go with your instincts.

With a large or extended family it can get difficult and emotions can run high. Have her husband made the final decision with your blessing. Tell your siblings this is what mom told you she wanted, this is what step dad decided and that you support him. Tell them that right now is everyones chance to surround her with love and enjoy the time she has left.

Its a hard decision and its an excruciating time of uncertainty....I hope YOU have some support as you go thru this. Your mom is very lucky to have you by her side at this time.

Unfortunately I know what this part is like first-hand, so I am sending you many hugs and prayers for peace and comfort.

Keep posting. It helps. We are all here for you.

_________________
- Katie Brown, Co-Founder and Director of LCSC-

15 yr cancer survivor.

"Any of us who have experienced the cancer journey- and survived it-
have an obligation to make the path clearer and aid those that come after us."
- Lance Armstrong

In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007
my parents are together in heaven


facebook www.facebook.com/lungevity

that summed it up quite well I think. the hardest thing we ever want or have to do is make those calls and then live with the results.. be assured that when the three of you have the talk as to what to doo and you all should do it since you are the primary healthcare proxies it has to be agreed upon. Don't ever look back and wonder though. whatever your hearts tell you is the right thing to do...

Hugs, thoughts and prayers to you!!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

I can't add a thing to what Katie and Randy have said - but I wanted you to know that I am keeping you and you family in my thoughts and prayers.

Diane

_________________
3/98 Dx squamous cell NSCLC 2a at 50 yrs
4/98 Left lung removed, no chemo/rad
8/08 Persistent cough and shortness of breath, first appt. with pulmonary doc 11/4/08
11/08 X-ray and CT show tumor in right lung. PET scan confirms tumor, shows no apparent spread
12/08 CT/needle biopsy shows squamous cell NSCLC IIIB, doctors don't seem to agree if its a new cancer or recurrence - but onc believes it is a new one
12/08 Start concurrent radiation/chemo, Cisplatin/Etoposide
1/09 Chemo switched to Carbo/Taxol due to intolerance of Cisplatin
2/09 Radiation completed
3/09 Chemo completed
5/09 CT shows spot where tumor was likely/hopefully scar tissue
6/09 Begin Lucanix trial
9/09 CT scan - stable
12/07/09 CT scan - stable
3/1/10 CT scan - stable
6/1/10 CT scan - stable - begin 2nd year of trial
8/23/10 CT scan - stable
10/25/10 CT scan - stable
1/20/11 CT scan - stable
4/25/11 CT scan - stable - completed drug portion of trial, now follow-up with 3-mo scans
8/1/11 CT scan - stable
10/24/11 CT scan - stable. At my request, switching to 6 mo scans.
4/24/12 CT scan - stable.
10/30/12 CT scan - stable.
2/26/13 CT scan - stable

Avatar is with 10-mo-old grandson Ethan at Xmas

It is with a heavy heart that I inform you all that my mother-in-law passed yesterday. She was surrounded by her loving family. It was very difficult. She passed on her dear father's birthday (which was very fitting since she took care of him at home 5 years earlier when he passed of bladder cancer). She is finally at peace. She fought a hard battle; diagnosed in 6/2012 (a mere eight months ago). RIP my dear mother..your love will be imprinted in our hearts forever.
8/14/54 - 2/16/13

Thoughts and prayers are with you and your family right now x

I followed your updates closely as my mom's SCLC diagnosis was around the same time. May the happy memories you shared help you through the coming days, weeks and months xxx

I am so sorry to hear of your loss. I know how quickly things can change and how it all seems like the last months have been a fog. You have been such a wonderful daughter-in-law and your mother-in-law was very fortunate to have you as an advocate. All I can say is that this disease is horrible and we can only pray that one day they will have a cure, or at least more options to prolong a good quality of life. You and your family are in my prayers.

I'm sorry I missed this post (or caught in somewhere else)
I just wanted to send my heartfelt condolences to you and yours. We continue to be here for you.

_________________
- Katie Brown, Co-Founder and Director of LCSC-

15 yr cancer survivor.

"Any of us who have experienced the cancer journey- and survived it-
have an obligation to make the path clearer and aid those that come after us."
- Lance Armstrong

In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007
my parents are together in heaven


facebook www.facebook.com/lungevity