Hi Everyone! I introduced myself and the fight that my mom is currently undergoing with her recent diagnosis of small cell lung cancer (extensive) about two weeks ago maybe?? Well, my mom is finally coming home from the hospital today. It's been a month since we admitted her !! She had the pleurodesis procedure done a week ago and it seems to be working for her. What we are very concerned about right now though is that she cant seem to stay awake long enough to eat or to do her breathing treatments. All she wants to do is sleep. She had one round of chemo so far and the dr. told us that her white blood cells are back to normal and seems to be recovering well from the treatment. I just am confused as to why she is so wiped out. I'm not sure if its the chemo, if she could be over-medicated, if it's everything she's been though.. or if its a combo of everything! It is so important for her to eat, but she cant stay awake long enough to do that or to even finish a sentence. ?? If anyone has experienced this, can you please give me some advice/suggestions? The doctors and nurses of course are all saying something different. My mom is refusing her breathing treatments because she is just sooo tired and wiped out. What can I do to help????

Thank you in advance for all your help!

Just an idea. Could she be depressed? It would be understandable. And many times if you are, all you want to do is sleep.

Hope this gets taken care of quickly.

_________________
Ginny
Please use gdecoursey@aol.com for email.

Earl born 1/28/42 - dx 9/21/02 - died 8/18/04. He was the sunshine of my life.

that she is depressed...but honestly, she cant even finish a sentence without closing her eyes and nodding off to sleep. Its like she is on too many medications or something. ?? We are going to search for more answers at the hospital today but we need for her to do the things that will help her get better and if she is not able to because she cant keep her eyes open for more than 10 minutes at a time, I'm not sure how hard she is going to be able to fight this disease... its just so scary... (

I was really "wiped out" and tired all the time. But what I was wondering is my Mom has such a low drug tolerance it's rediculous, wondering if your Mom is the same? Also alot of the nausea meds they gave me can make you sleepy. You are on the right track take all of her meds, over the counter ones too, to the Dr's and see what they say. Also one of my best sources of information is my pharmacist, they have a much greater knowlege concerning drugs. Good luck!

_________________
Mar. '08-Routine xray found Spot tip of upper left lung.
Dr orders CAT. growth confirmed.
Sent to Pulmonolgist who orders PET.
Pet results-my spot lights up like a Christmas tree.
Can't reach spot for biopsy referred to surgeon.
Surgical Biopsy scheduled for Apr. 28th '08
Apr. '08-Surgeon found SCLC, removed upper left lobe and surronding lymph nodes.
Everything biopsied no other cancer found, declaired NED by surgeon on Apr.28th '08
ONC wants me to start adjuvant therapy.
June '08-MRI brain scan and CAT NED
Chemo cisplatin/vp16 3 days every 3 weeks 4 sessions ended Aug. '08
Partial hearing loss due to Cisplatin
Sept. '08 1st CAT after treatment NED
Dec. '08-2nd CAT after treatment NED
Apr. '09-MRI (brain) and CAT NED
Aug. '09-CAT NED
Dec. '09-CAT and MRI NED
Apr. '10-CAT and MRI NED
Oct. '10-CAT and MRI NED
Jan. '11-XRay NED
Oct. '11-CAT NED

((((Alyssa))))

I am so glad to hear that Mom is home!

I am wondering the same as the others, is this a reaction to meds. I know a lot of members here have been wiped out by chemo but this sounds like something more than that.

I would definitely continue to ask the nurses and/or call the doctor. It could be something as simple as a change of dosing or a new med..

Keep us posted..

Hugs
Christine

I agree, it sounds like she may be especially sensitive to one or more of the medications. If you care to list them, someone may have a personal story to relate. And I also agree that a pharmacist would be the "go to" person to check for potential drug interactions.

But glad the pleurodesis went well!

Ned

_________________
Ned is just my nickname, though it would be nice to merge it with the other meaning eventually...

Aloha means "Hello, goodbye, love, compassion, welcome, good wishes." It means belonging to others with a common humanity. It's defined better as a feeling in the heart than by words.

Dx NSCLC adenocarcinoma IIIb Sep 2006, now stage IV. Taxol+Carboplatin+Avastin 4 mo., Avastin 8 mo., Tarceva 16 mo., Alimta 12 mo. (sometimes combined with Cisplatin or Carboplatin), Navelbine since Feb 2010, 10 sessions of WBR in March 2011. See My Cancer Journey: viewtopic.php?p=351369#p351369 — UPDATED 03/05/2011.

Above left: Our golden retriever Rosie, who joined the family on 3/5/08 at the playful age of 2.

Below: Hannah, our golden companion 1994-2007.

My mom had another chest xray this morning and the doctor said it looked "stellar" !!! What an awesome word to use !!! :0)

The medications they have my mom on right now are Perkiset and Oxycodone (i apologize for the spelling errors) . My mom also has fibromayalgia and has been taking pain medicine for as long as I can remember. I dont believe she has a low tolerance to medications. She was on several different types of medication while going through her first chemo treatment, her pleurodesis, and now just to manage the pain. I am hoping her doctor can pinpoint exactly what is causing the extreme exhaustion. I cant begin to imagine what she has been going through and what it must do to a person's body and mind. I am hoping once she is home she will begin to get stronger and start to take control again over her life. My sister has been with her at the hospital every day and has been assisting her with every thing possible. To the point, where I believe my mom feels she has lost some control over her life. We talked to my sister and told her that we believe the best and right thing to do now is to encourage my mom to take back control over the things she CAN do and let her know that we will be there to help her with the things she CANT do... Do you think this is the right approach to take???

Hi-my Mom went on antidepressants and she said they saved her sanity. My Mom fell into a deep depression when first Dx-also Small Cell Extensive.
When my Mom was tired like that it usually had to do with her Red Blood count being very low and she needed transfusions.
I'm not on much lately but if you need to PM with any questions-I would be happy to talk to you. Good Luck to your Mom.
Dar

_________________
My Mom
5/1/46-6/20/08

When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight

Jake

deb took oxycodone 2x a day adn oxycontin for breakout pain during the day! She originally slept a lot until a New Onc adjusted her pain med dosages Then she even took Classes at Community college adn was doing great!!

See if anything in this link helps at all!!

http://medchecker.com/

_________________
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!!

My dad was very much like this in the beginning and it took some sorting out to find the right drugs for him. Anti-nausea medication can cause drowsiness as well as pain meds. Being depressed and also being dehydrated can all cause fatigue and sleepiness too. There's not a certain way to know what the culprit is other than to go down the list one by one with her doctor and adjusting- it can be trial and error for a while or you may just need to wait until her system gets used to all the new drugs and toxins.

I think giving your mom all the resources you can find is indeed the best approach. It's always up to her how she wants to fight this fight for her life, but let her know that HOPE exists, there are survivors and resources and different ways to inspire, encourage, and boost her esteem.

Sending the best wishes and please keep us updated.

I'm so glad to read that your Mom is out of the hospital! My Mom would nod off like that but she was getting radiation. She was also very sleepy on phenegran for nausea. I agree that it's most likely the meds...you're on the right track.

Ask about a mask for the breathing treatments. She can just sleep right through them!

_________________
Mom: SCLC 6/7/40-11/28/07
Dad: Renal failure 1/21/35-12/13/06
*Living forever in my heart.*

I think you really might want to ask you mom how she wants to go from here now that she's out of the hospital. I looked back and her dx was just in early January? If she's a woman who has been independent and worked hard all her life, she might benefit from a little pampering if your sister doesn't mind doing it. I know my husband babied me for awhile and it was greatly appreciated. When I started feeling better I had no trouble telling him he needed to let me start doing for myself. Her doctors may say her condition is great but the process of getting from where she started to where she is now was hard and physically demanding. The most important issue seems to be getting her meds adjusted so she gradually starts being awake more so she can eat. For now I'd prepare healthy snacks (or whatever she likes) and have them ready to introduce in small portions catching her when she is awake. Doesn't sound like preparing meals and offering them at what we think of as normal mealtimes will work. Neither will noting she's awake and starting to prepare a meal if she's going to be back to sleep before it's ready. That's only frustration for the caregiver.

Good luck. Hope these as some of the others excellent suggestions/comments help.

Judy in Key West

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.

Thank you all for your suggestions and advice.. My mom has an appt with her Oncologist today. We were told that it was going to take her awhile to get back on her feet and feeling better. I just hate to see her so out of it. All she does is sleep right now and although she is on pain medication, she is still hurting and needs her medication before it's time for the next pill. We need to get a handle on the pain first. Hopefully her dr. appt today will be of help with that as well. My mom got two bed sores from the hospital and she is saying that is what is hurting her the most right now. I just feel so bad for her and helpless.. Useless at times I suppose. I go to see her every day, with the baby too, and Im not sure she even knows im there at times. So sad. She is losing her hair from the chemo. I cut it for her yesterday into a nice short "do"... She likes it ! :0) Im hoping that my mom is just wiped out from everything she has been through and will gradually get better and stronger??? But I know that starts with eating which we are having trouble getting her to do right now. She said everything tastes awful and she gets full really quick... I believe I read that it one of the side effects from the chemo and medications?? Just wanting her to feel better... :0(

Good Morning Alyssa

Yes, the awful taste is often a side effect of some chemos. It is a metallic taste that just makes everything kind of yucky.

Jerry had bed sores that were so bad on his tailbone.. I know the V.A. hospital had a pressure type bandage on his at one point but then they said it needed to "air". I have to ask Mom what the ointment was they were using on it. I seem to recall A&D ointment but I am not 100% sure on that. I will find out though and get back to you either here or in a PM.

If Mom is having pain other than the bed sores and it is not being controlled with the pills, you can ask the doctor about fentanyl patches. (not thinking I spelled that correctly, sorry) We do have members here who have used them and are still using them and with great results.

Keep us posted~

Hugs
Christine

Alyssa, not only can food taste bad, but with some chemos eating/swallowing can be actually painful. The main objective should be to pack as many calories as possible into the foods and/or beverages which she CAN tolerate. If she's getting tired of Ensure, Boost, or one of the lower-priced clones, try the various flavored packets of Carnation Instant Breakfast mixed in some sort of milk or milk substitute. Very tasty compared to Ensure. Here's something I wrote a while back which explains the situation from a patient's perspective:

http://lungevity.org/l_community/viewto ... 878#316878

Ned

Thank you! I printed the link you gave me and I am taking it to my moms house today after work. I really now believe that my mom just doesn't know how to describe to us why she doesnt want to eat. She just says "it doesn't taste good" I didn't realize it could be affecting her in those other ways as well. I plan on doing everything I can to help her pack on the pounds and nutrients. We just ordered Mighty Shakes (they were given to her in the hospital - protein shakes) She loves them and the only way we could get them is by ordering them online... I will take all that you said into consideration and try to help her find foods that she can tolerate. Here's to hoping !!! :0) xo

Alyssa
I have not talked to Mom yet about the bed sores but I am sure I will hear back from her soon.

I wanted to share our experience with the nutritionist we had for Jerry. Simply put he told us to forget everything we all strive to do to remain "healthy". ie: USE heavy cream, whole milk, real butter. Eat lots of cream soups, ice cream, milk shakes etc. Mom added ice cream to the Boost and Ensure and made them into milkshakes. We also used half and half or cream to replace half of the milk when we made pudding. Mom added butter and cream to mashed potatoes and used extra butter on veggies etc. Even if he only ate a small amount there was still an increase in calories.

I am really glad you found the shakes on line and hope they will work wonders for Mom!

Hugs
Christine

Thanks Christine. I am writing all your suggestions down as we speak! Will let you know how she does! Have a wonderful day! xo

My sister has been staying with my mom 24/7. All the advice that I have received here and read throughout this site, we are using.. Such great advice from everyone.. However, we cant seem to get my mom to do what she has to do to fight this cancer. She is sooo tired and wiped out right now, which is very understandable, however, she is refusing to do her breathing treatments, wont take her medicine (pills other than her pain medication). She wont get up to walk around. She wont eat, or even try to eat... She just wants to sleep. I dont know if she is giving up or if she is just physically is unable to do these things right now. My sister just told me that she feels like giving up on my mom because she feels my mom is giving up. She is frustrated and upset that my mom wont even "try" at anything. I dont know if it's normal for cancer patients to go through this in the beginning? I cant even begin to imagine the fear, the thoughts, the depression, that goes through one's mind. I have a great amount of respect for all of you that have fought and continue to fight as hard as you do. I just need to figure out how to get my mom motivated to do the same. Unfortunately, being a single mom and needing to work, I cant be there all the time and as much as I want to be to help my sister with my mom. :0( I dont know what to do....

Sorry your Mom is worrying you and your Sis so much. I can't speak for your Mom, but I don't even have the words to explain how horrendous my cancer dx and treatment was for me. I had an upper left lobectomy (not to bad, was a good girl did all my stuff), then I had 12 weeks of chemo. It was horrible. I was so sick and weak and scared and horrified. I almost stopped chemo. Besides being just sick and weak, my body just ached, then I ended up with thrush and then shingles. I know how hard it is to watch a loved one not doing what they are "supposed" to, my Mom is in congestive heart failure, but hang in there. Your Mom might have given up or she could be fighting as hard as she can!

_________________
Mar. '08-Routine xray found Spot tip of upper left lung.
Dr orders CAT. growth confirmed.
Sent to Pulmonolgist who orders PET.
Pet results-my spot lights up like a Christmas tree.
Can't reach spot for biopsy referred to surgeon.
Surgical Biopsy scheduled for Apr. 28th '08
Apr. '08-Surgeon found SCLC, removed upper left lobe and surronding lymph nodes.
Everything biopsied no other cancer found, declaired NED by surgeon on Apr.28th '08
ONC wants me to start adjuvant therapy.
June '08-MRI brain scan and CAT NED
Chemo cisplatin/vp16 3 days every 3 weeks 4 sessions ended Aug. '08
Partial hearing loss due to Cisplatin
Sept. '08 1st CAT after treatment NED
Dec. '08-2nd CAT after treatment NED
Apr. '09-MRI (brain) and CAT NED
Aug. '09-CAT NED
Dec. '09-CAT and MRI NED
Apr. '10-CAT and MRI NED
Oct. '10-CAT and MRI NED
Jan. '11-XRay NED
Oct. '11-CAT NED

Alyssa...first off, I'm so sorry for what you're facing right now. It's not an easy ride, I know. I have read everyone's answers here and I think everyone is just so great on this site for support and friendship through the hardships of Lung Cancer.

I really think that it's a combination of the meds and depression. Depression causes huge fatigue. Always remember, keeping asking the docs until you get a straight answer. The thing I found with my dad was some docs give you the run around and you just have to keep pushing for the answer that solves your problem.

My dad didn't have the sleepiness but he was "body" tired. He just kind of sat around and didn't want to walk to much etc.

Keep us posted...we're all here to help.

Gabby :O)

_________________
My Daddy, 63 years young.

April 2008/He has Bronchitis type symptoms. We think it's the Flu because both dad and I had the same flu. Mine goes away and his lingers...
May2008/Given antibiotics for "Bronchitis"..few weeks later, still wont go away. Goes in for X-rays, nothing shows up...given more antibiotics.
June2008/"Bronchitis" still there...goes for more x-rays and shows cloudy spot. Goes for Broncoscopy, Bone Marrow and CT Scan tests.
July 7 2008/Results: Diagnosis of SCLC stage IIIB, brain, throat and stomach are CLEAR. (by this time his coughing attacks are violet)
July25,2008/First round of Chemo...three consecutive days at about 2 hours each.
August 12,2008/blood work and X-rays done...Tumor has significantly decreased in size.
August15,2008/Second Round of Chemo. Developing an allergic reaction and they need to give him Benedryl before they proceed...all goes well.

He is now in between chemos and is very tired.
Aug 25th,2008/Follow-up CT Scan taken...
Aug 27th,2008/CT Scan results show great decrease of tumors in lungs BUT....Fluid build-up in one lung.
August 29th,2008/Hospitalized for about a week to drain fluid out.
August 30th,2008/Drainage of Lung...very painful but it's now over with. Doing great so far...waiting for him to heal. Chemo postponed by a week to allow full recovery.
September 2008 - Has his third round of chemo. Everything is going very smoothly, dad has even taken up walking around the neighborhood, up hills, down hills exercising his lungs.
October 2008 - Has last round of chemo and an appointment scheduled for radiation. 15 sessions preventative to the brain and throat. So far so good...
November 24, 2008 - Dad walks into room saying he's having shortness of breath. We all think it's just another complication of the chemo. Taken to hospital and put on antibiotics treating him for developing pneumonia. We take him home and his breathing gets worse and is not improving. We take dad to emergency where they put him on a ventilator.
November 25, 2008 - Dad's condition worsens. We don't know where this all came from. The doctors say there is nothing more they could do. :O( Saddest day of my life.
November 26, 2008 - As a last request dad wanted radiation and then wanted to just go home (he hated hospitals!) Dad gets his blast of radiation. By this point he is struggling to take one breath. Gets sedated and transported home.
November 27, 2008 2:16am - Dad passes away in his own bed with his family around him.



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