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Thread: Adenocarcinoma Stage IV Lung Cancer

  1. #1
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    Adenocarcinoma Stage IV Lung Cancer

    My 89 year old Mother was diagnosed with Poorly Differentiated Nonsmall Cell Adenocarcinoma Stage IV Lung Cancer on March 8, 2013.

    She was a smoker but has been "quit" for more than 40 years.

    We thought she had no symptoms of this cancer but in retrospect, the signs were there. We did not recognize them. Or we were in denial.

    Late last summer/early fall, she suffered unexplained weight loss (more than 4 dress sizes) but my family attributed this to dental issues, loss of teeth, and new dentures. I had a gut feeling that something was not right at this time, but she insisted it was her change in diet due to the 'teeth' issues. I also felt that, she was getting older, and naturally just loosing her appetite. She often pushed food away, or ate much smaller portions than was her usual habit.

    She complained of back pain and when she was examined by her internal medicine doctor, he just made a note of it in her files. Mom suffered from mild arthritis and the back pain was brushed aside.

    She had a mammography in November, and another one in December because the imaging had a 'spot' on it... the tests turned out to be 'nothing'.

    Also in November, she complained of a lump on her chest near her breastbone. She insisted that it was 'nothing', that she had sprained herself, and a million other excuses why she should not follow this up with a doctor visit. I made several attempts to drag her to the doctor, even resorting to 'kidnapping' her by taking her to her clinic. She was always furious and refused to see the doctor.

    Finally, in late February, Mom asked her sister to take her to the Doctor because her back pain was becoming worse and finally, she was alarmed. The pain could no longer be ignored or explained away. In her words, "it hurts like hell, and God needs to help me".

    After a battery of tests which included blood tests, CAT and Bone scans, and a biopsy... she was diagnosed. The original tumor is in the lung, upper right lobe.

    The lump on her chest has grown to the size of a lemon. Her pain is in her back, chest, neck, breast, side and arm. Up until the diagnosis, she hid this pain. Now she will freely discuss it.

    She has 'spots' in her liver and bone. Her oncologist feels doing a biopsy on other sites is unnecessary, as her treatment would remain the same regardless of a cancer confirmation or not in the other organs. He does not want to subject her to more biopsies.

    Her CAT scans confirmed the cancer has spread to the pleura and lymph nodes.

    I am grateful that her brain scan was clean.

    I've asked the oncologist what her prognosis is... and I don't get a straight answer. She tells my Mom that she is "going to be fine"... Mom asks her if the chemo will take the lump away, and the doctor says "eventually... chemo is not a magic bullet, it will take time."

    Given my mother's age, I am prepared for her passing to this disease. My concerns are many... she lives alone and fiercely guards her independence. I want to go live with her to help care for her... she refuses. I finally got the doctor to order her not to drive her car. I call her several times a day... I visit her at least once a day... I'm making sure she is taking her pain meds. I want a "med alert" device installed... Mom says she does not need it.

    Her internist told her she had a year to live with treatment. This was before all her CAT scans and biopsy was complete. I told this to her oncologist, who said, "the internist based his statement on the results of an average of thousands of cases", and then would not elaborate. When I review the results of the medical tests I find it hard to believe she will last several months, let alone a year. I know there is always hope, but there is also reality.

    The oncologist has started her on chemo treatments (ALIMTA). Her dosage is very small... and I am troubled by this. The oncologist tells me that her chemo is to reduce her symptoms. Is this why she is only receiving a very small dose? Does anyone know why small chemo dosages are prescribed?


    Thank you for reading.

  2. #2
    Hi, sorry to hear about what you've been going through.

    Quote Originally Posted by JWolfe View Post
    Her internist told her she had a year to live with treatment. This was before all her CAT scans and biopsy was complete. I told this to her oncologist, who said, "the internist based his statement on the results of an average of thousands of cases", and then would not elaborate.
    Statistically, that indeed is about what the median overall survival of people with stage IV non-small cell lung cancer. You clearly understand that other factors can influence this for individuals. For example, people whose health is in bad condition (bedbound, minimally mobile, etc.) don't do as well, nor do people with brain involvement.

    The oncologist has started her on chemo treatments (ALIMTA). Her dosage is very small... and I am troubled by this. The oncologist tells me that her chemo is to reduce her symptoms. Is this why she is only receiving a very small dose? Does anyone know why small chemo dosages are prescribed?
    Alimta (Pemetrexed) is one of the first-line options used for people with stage IV lung cancer. Unfortunately stage IV lung cancer can't be cured, so the goal of therapy is quality/length of life, i.e. palliative. It sounds like the doctor is being careful that there isn't more harm done than good by starting with a dose that is less likely to cause bad side effects and may consider adjusting depending on how well it works for her and what side effects she experiences. How do you know that she's getting "a very small dose?" This is the usual dosing of Alimta in lung cancer.

  3. #3
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    Timeshifter is right. The doctor isn't giving her medication to cure her, because it isn't possible any more. She has cancer everywhere throughout her body. Given her heavy tumor load and her age, he is giving her a light dose to help relieve her pain and symptoms. It won't get rid of the cancer completely, but it may slow down or halt the growth of it.

    I'm so sorry you have to be here. What will help in the future is if you got a binder and put all her med records in there for her cancer diagnosis. It will help you and her keep track of what's going on. And give your mom some time. Her fierceness may be a result of the diagnosis; she is likely in denial or just still trying to accept that fact that she is sick; in time, she may give in a bit after she realizes that it would be better to accept your care.

    And don't beat yourself up about the symptoms. Lung cancer is just so much less publicized than say breast or prostate so its hard to look for the signs because the general public just isn't educated about them. Plus, the symptoms are fairly common ones that are related to things far less serious than cancer. I look back and it sucks to think that I could've told my boyfriend to go to the doctor earlier, but he was likely already Stage IV at that point and it really wouldn't have made a difference anyways. Take one day at a time, buckle yourself in for the ride. And let us know if you have any other questions. We'll be here if you need some answers or just need to vent

    Emily
    Boyfriend, 25, dx'ed Stage IV NSCLC 6/29/11. Malignant pleural effusion, liver/spine/lymph mets. Adenocarcinoma w/unknown primary! So confusing.

    Jul '11: 2 cycles Carboplatin/Alimta (failed)
    Oct '11: Docetaxol/ramucirumab/Xgeva/Neulasta
    Dec '12: Liver met growth
    Jan '13: 10+ brain mets, 2 wks of WBR
    Mar '13: CDK 4/6 inhibitor trial (failed)
    May '13: Tested ROS1+
    June '13: Xalkori clinical trial for ROS1+
    Aug '13: Liver mets gone, lung spots gone. Doing great so far!

    Thread: http://www.cancerforums.net/threads/19136

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    I am sorry you are going through this with your mom. The above posts sum up everything I would have to say, so I will only add to the Alimta part that my dad has taken at some stage. Alimta was the only chemo regimen that reduced his tumours for some time, all other chemo drugs have failed. Of course every drug works differently in everyone so there is no absolute numbers or expectations for any cancer patient and that also applies to the how long question... Try to stay calm, allow your mom to express her feelings because she will probably go through various stages and change her attitude many times. She may ask you to care for her at some point, but if she does not want this right now, try not to press her. It is very hard for people who have been self sufficient all their lives to accept being helpless and needy of others! Be there for her, but allow her time to breathe and try to spend quality time with her, making memories that will stay with you for ever.

    Best of luck, we are all in the same boat here so talk to us because we do understand how you feel.

    Mary

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    Quote Originally Posted by timeshifter View Post

    Alimta (Pemetrexed) is one of the first-line options used for people with stage IV lung cancer. Unfortunately stage IV lung cancer can't be cured, so the goal of therapy is quality/length of life, i.e. palliative. It sounds like the doctor is being careful that there isn't more harm done than good by starting with a dose that is less likely to cause bad side effects and may consider adjusting depending on how well it works for her and what side effects she experiences. How do you know that she's getting "a very small dose?" This is the usual dosing of Alimta in lung cancer.
    Thank you for your comments, Timeshifter.

    The doctor commented that "she will be getting a very small dose that hopefully will control or reduce the anticipated side effects of the chemotherapy" and "we will watch how she does on it". In addition, the nurse who was administering the chemo remarked that she will not be in the 'chair' for a very long time, since it was a low dose. Further, when I went to set up her next chemo appointment, another comment was made that she could "come in the afternoon because those who had long sessions needed to start in the morning." Additionally, when I was questioning the nurse, she commented that the drug would only drip for "10 minutes".

    In reality, she was in the chair for four hours... I was told she was receiving hydration, anti-nausea meds, etc.

    Of course, none of this actually tells me the amount of the drug she is receiving. Your excellent link for the dosing of Alimta was very helpful. Mom received a B12 shot prior to chemo and is also on a regime of Folic Acid 1mg daily. She is also taking Dexamethasone prior to and after chemo.

    I will ask for a copy of the script when we go to her next chemo session.

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    Quote Originally Posted by emilyloveslime View Post

    I'm so sorry you have to be here. What will help in the future is if you got a binder and put all her med records in there for her cancer diagnosis. It will help you and her keep track of what's going on. And give your mom some time. Her fierceness may be a result of the diagnosis; she is likely in denial or just still trying to accept that fact that she is sick; in time, she may give in a bit after she realizes that it would be better to accept your care.

    And don't beat yourself up about the symptoms. Lung cancer is just so much less publicized than say breast or prostate so its hard to look for the signs because the general public just isn't educated about them. Plus, the symptoms are fairly common ones that are related to things far less serious than cancer. I look back and it sucks to think that I could've told my boyfriend to go to the doctor earlier, but he was likely already Stage IV at that point and it really wouldn't have made a difference anyways. Take one day at a time, buckle yourself in for the ride. And let us know if you have any other questions. We'll be here if you need some answers or just need to vent

    Emily
    Thank you for your response, Emily. I am so sorry about your boyfriend.

    I have set up a system for Mom's medications. All her meds are color coded with cross references to a color coded sheet that describes the pills she is taking. The colors coincide with the dosage times she needs to adhere to. The system is working very well, and Mom thinks it was a 'genius solution' to a confusing task. She understands how it works and is able to relay her med schedule to others.

    In addition I have created a "pain level" log for her. This is a sheet with grid/table lines that allows her to record the date/time, pain level, pain location, and what medication she took to relieve it. Her meds have been given short, uncomplicated names by me which she associates very well. For example, oxycodene is called OXY. The log also includes a colored chart that changes from pain level to pain level, with words and numbers that describe the level of pain: none, annoying, uncomfortable, dreadful, horrible, and agonizing. This chart is something like the "smiley face" pain chart that doctors use for children. We tried that chart, but Mom could not relate to it... the color chart with the word description works better for her. As a test, I ask her when I call her, what is her pain level, and she can immediately reply with... "oh today I woke up with a 6" or not too bad, I'm a 4 all morning."

    I will be handing the log to her oncologist on her next visit. I decided to do this because when the doctor questioned her about her pain levels, she found it difficult to describe... or she did not remember. My mother does suffer from short term memory loss due to her age. She is however, smart as a whip.

    I know it is going to be a long, emotional journey... I am braced for it.

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    Quote Originally Posted by mary_athens_greece View Post
    Try to stay calm, allow your mom to express her feelings because she will probably go through various stages and change her attitude many times. She may ask you to care for her at some point, but if she does not want this right now, try not to press her. It is very hard for people who have been self sufficient all their lives to accept being helpless and needy of others! Be there for her, but allow her time to breathe and try to spend quality time with her, making memories that will stay with you for ever.

    Best of luck, we are all in the same boat here so talk to us because we do understand how you feel.

    Mary
    My mother was in total denial when she was first told that she had lung cancer. She flat out refused to believe it. First, she swore that she had "quit smoking 40 years ago, so this is not possible"! Then she blamed the pain on lifting heavy boxes, or gardening, or any other incident that happened 'years ago'.

    I found myself put into a position of guiding her into an understanding. I gave her information when she asked for it. I withheld information I felt she would be unable to process. Slowly, like a flower bud opening up... she began to understand the seriousness of her illness. She still has days when she feels she will be 'cured', and other days when she comments that she would like to live long enough to see her 3rd great grandchild born. Her pain levels have much to do with her acceptance of her illness. The more pain she experiences, the more she realizes that her cancer is advancing.

    My mother has been living alone since 1989, when my Dad passed away from complications from Diabetes. She is a fighter and a very strong woman. Up until this diagnosis, she has been healthy all her life... with the exception of a gall bladder operation 20 years ago. She has age related dementia but it is not severe. Up until her diagnosis, she drove her car around town and shopping. She enjoyed walking, shopping, gardening, and socializing with her friends. She took a great deal of pride in her appearance and aged wonderfully... a model of aging gracefully. Last week, she insisted on purchasing several wigs so she could continue to look as best as she can. We bought new makeup. Got a few new blouses to lift her spirits.

    She is not going down without a fight. I am simply astounded at her strength.

    Janice

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    Janice,
    I'm so sorry you find yourself here. This is a hard road. I lost my mama on the 12th to this dreadful disease. My mom's diagnosis was a fluke. She went in for annual blood work and stumbled across this. She had no symptoms at the time of diagnosis or for the first 5 mos. Mom made it 10 mos. As I look back, we thought her forgetfulness and losing her thought process mid-sentence was due to side effects of chemo, but I'm almost certain the cancer was in her brain. She never had a follow-up MRI since the original diagnosis. The last three weeks she was with us, she went from sentences to being able to speak mere words only now and again.

    My mom also lived alone for years. My brother and I gradually increased the amount of time we were there (overnight, to long weekends, to half weeks, to full time). It seemed to be an easy way for her to transition us into being there with her full time.

    One thing hospice told us (we only had them on board for 2 weeks prior to mom's passing) was that, if you see changes monthly, they have months. If you see changes weekly, then typically weeks. Daily changes typically mean days and they were right.

    You sound like a wonderful daughter, doing all she can for her mom. I think you are great. Keep up the good work and continue to love and support mom. Don't forget to make memories and treasure moments. My thoughts and prayers are with you. Anj.
    Caregiver to mom, 64 Ovarian Cancer Remission since 1997.
    6/19/12 Annual blood work - CA125 came back elevated.
    6/21/12 CT abdomen, RUL 2.8cm spot, LLL 5mm spot, lt. adrenal gland mass 8.3cm, rt. adrenal gland mass 4.6 cm.,
    6/28/12 Brain MRI-Clear,
    6/29/12 Lung Biopsy=Stage 4 NSCLC.
    7/11, 8/3, 8/23, 9/13/12 Chemo (Carb/Alimta).
    CT Scan 10/4/12 1 of 4 tumors decreased. 20% Kidney function. Blood transfusion
    10/9/12. Mets to liver.
    12/11 chemo (carb/taxotere) continued thru March.
    March 27, 2013. Told no more chemo, cancer now in the brain, to call out Hospice. Set up hospice March 31, 2013. Mom passed April 12, 2013. She will always be in my heart, never forgotten and always loved. May we reunite soon....after only a temporary separation!

  9. #9
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    Quote Originally Posted by Ababb View Post
    Janice,
    I'm so sorry you find yourself here. This is a hard road. I lost my mama on the 12th to this dreadful disease. My mom's diagnosis was a fluke. She went in for annual blood work and stumbled across this. She had no symptoms at the time of diagnosis or for the first 5 mos. Mom made it 10 mos. As I look back, we thought her forgetfulness and losing her thought process mid-sentence was due to side effects of chemo, but I'm almost certain the cancer was in her brain. She never had a follow-up MRI since the original diagnosis. The last three weeks she was with us, she went from sentences to being able to speak mere words only now and again.
    Thank you for your thoughtful response, Ababb.

    I am so sorry for your loss. Loosing a parent is heart wrenching, but it is more challenging knowing that we are their main support for their journey.

    While I do have sisters and a brother, they live many miles and out of state from Mom. I live the closest to her... about 10 minutes by car. I have lived near her for the last ten years, knowing that my Mom would rely on me as she approached the end of her life.

    Still, I never in my wildest dreams thought she would be faced with cancer. I felt almost side swiped, but of course... the signs were there as I have stated.

    Like your Mom, she had what I felt were no symptoms (at least for cancer). When the doctor called me after her blood test with the news... I was floored. He told me first... which I am ever so grateful for... as it prepared me and helped me support Mom when he finally delivered the news to her.

    My mom also lived alone for years. My brother and I gradually increased the amount of time we were there (overnight, to long weekends, to half weeks, to full time). It seemed to be an easy way for her to transition us into being there with her full time.
    I thank you so much for this suggestion and advice! It seems so much more kind, to ease the transition in this manner. It seems perfect, really... I often spent an evening with her and stayed over-night, so this would not be much removed from a 'normal' visit.

    One thing hospice told us (we only had them on board for 2 weeks prior to mom's passing) was that, if you see changes monthly, they have months. If you see changes weekly, then typically weeks. Daily changes typically mean days and they were right.
    This seems almost intuitive... as I have watched small changes in her over the last month that when combined, equal significant changes. Still, I am amazed at how well she seems to be doing. I must say, this also worries me, as I feel that she may suddenly take a turn for the worse. I've often heard of cancer patients who were doing really well, and then suddenly decline almost over night.

    I am desperately trying to read the signs that she is declining, or how aggressive her cancer is, and the progress or lack of improvement in her general well being and health. I would like to get her into Hospice at the appropriate time, yet I don't want to push for it too early either. I am concerned with how much I can handle alone. I have chronic osteoarthritis which limits much of what I can do physically, so I know I am going to need help at some point.

    You sound like a wonderful daughter, doing all she can for her mom. I think you are great. Keep up the good work and continue to love and support mom. Don't forget to make memories and treasure moments. My thoughts and prayers are with you. Anj.
    Thank you so much for your kind words and encouragement. I do appreciate it very much.

    Janice

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    Hi Janice,
    I am sorry you find yourself in the role of caretaker to your mom. Being the sole caregiver is a difficult position but also a rewarding one. You need to find a balance though and asking for help is very important. I was the only person caring for my husband with advanced lung cancer though I did have hospice but since I lived in a remote area I saw them once a week at most. It didn't seem like it was so bad while I cared for my husband but in the end I burnt myself out and suffered the consequences healthwise.
    Hospice will be more than happy to assist you and your mom in many ways both with nursing and medications as well as some respite for you. If you feel it is too early to call Hospice then maybe a home health aid would work to start.
    Just keep in mind that your ultimate goal is keeping your mom comfortable but you can't neglect yourself.
    Wishing you the best,
    Charlene
    Husband Danny, age 66,
    diagnosed squamous cell June 6, 2008,
    Right pneumonectomy performed with no adjuvant chemo or radiation on Sept. 2008
    Metastatic lung cancer in the ribs, scapula and right kidney raised it's ugly head May 2009.
    Renal cell carcinoma diagnosed May 2009
    One round carbo/taxol, too weak to continue
    Cancer racing like a freight train
    Held my husband's hand when he passed away September 29, 2009

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    You are one organized person! And, you have some really great ideas that some of us (me) may copy. I received a lot of good information from this thread. Thanks!

    And, Janice, you are doing a great job with your mother.

    Christine
    Both squamous and adenocarcinoma in right center lobe, diagnosed 11/08/12. Radiation, Taxol & Carbo for 8 weeks. New tumor found 02/18/13 in upper right lung and 3 in liver. Began Abraxane & Carbo. PET showed 5 tumors in liver and spread to hip bone 04/30/13. Began Taxotere and palliative radiation for hip. Will soon begin Tarceva.

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    Quote Originally Posted by onecoyote View Post
    Hi Janice,
    I am sorry you find yourself in the role of caretaker to your mom. Being the sole caregiver is a difficult position but also a rewarding one. You need to find a balance though and asking for help is very important. I was the only person caring for my husband with advanced lung cancer though I did have hospice but since I lived in a remote area I saw them once a week at most. It didn't seem like it was so bad while I cared for my husband but in the end I burnt myself out and suffered the consequences healthwise.
    Hospice will be more than happy to assist you and your mom in many ways both with nursing and medications as well as some respite for you. If you feel it is too early to call Hospice then maybe a home health aid would work to start.
    Just keep in mind that your ultimate goal is keeping your mom comfortable but you can't neglect yourself.
    Wishing you the best,
    Charlene
    I took your words to heart, Charlene. I found myself crumbling under the burden of the demands I put on myself, to care for Mom. I suddenly realized this week, that I have to manage my time better. I am running to Mom every time she picks up the phone to asks me for something... anything... and often the task could have been performed only hours prior to when I was with her and before I left her. I think what is going on, is that she feels more secure with me there, but she also is not yet ready to give up her independence. My sister has also encouraged me to learn how to say "no" to the constant demands and meet her requests with a schedule that I can manage. I think that is good advice as well.

    I'm also going to ask her sister (who lives only a few blocks from her) if she can spend some time with her one afternoon a week. This would give me a break and also be good for Mom to have other company and to socialize. That brings up a whole other topic... the stigma of cancer. My Mom's sister is 2 years younger than Mom... which would make her 87. My Aunt somehow implied or made Mom feel like she could 'give the cancer' to her. I think I have to have a discussion with my Aunt about this as well.

    Thank you so much for your good advice!

    Janice
    Caregiver for Mom, age 89 with Adenocarcinoma Stage IV Lung Cancer
    Diagnosed: March 8, 2013
    Symptoms: Back ache, fatigue, weight loss, painful chest lump
    Treatment: Palliative Care to relieve symptoms; Referred to Pain Specialist on May 3
    Meds: (Update May 27, 2013) Fentanyl Patch, Oxycodene, Folic Acid, Dexamethasone, Decadron IV, Zofran IV, Cymbalta
    April 12, May 3, May 24: Chemo Alimata (Pemetrexed)
    June 17, Re-evaluation: Mets tumors 'stable', primary tumor slightly grown; new round of chemo Gemcitabine (Trade Name: Gemzar) prescribed; moderate right pleural effusion has developed.
    July 2-8, Hospitalized with edema, water on the lung; Discharged to Hospice care.
    August 2, 2013, Mom slipped quietly into a coma at the end of July and passed on August 2nd.
    My Story

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    Quote Originally Posted by Razzlesnaps View Post
    You are one organized person! And, you have some really great ideas that some of us (me) may copy. I received a lot of good information from this thread. Thanks!

    And, Janice, you are doing a great job with your mother.

    Christine
    Hi Christine! Feel free to take any ideas I have, if they will help you!

    Taking care of elderly folks is really satisfying. I love trying to find ways to make their daily lives easier to manage and take some stress away. I am always amazed at how well elderly people can think and function. I can only hope to be as bright and vivacious at 89 as my Mom is today!

    You are in my prayers Christine! Thank you so much for coming to my thread and touching my heart.

    Janice
    Caregiver for Mom, age 89 with Adenocarcinoma Stage IV Lung Cancer
    Diagnosed: March 8, 2013
    Symptoms: Back ache, fatigue, weight loss, painful chest lump
    Treatment: Palliative Care to relieve symptoms; Referred to Pain Specialist on May 3
    Meds: (Update May 27, 2013) Fentanyl Patch, Oxycodene, Folic Acid, Dexamethasone, Decadron IV, Zofran IV, Cymbalta
    April 12, May 3, May 24: Chemo Alimata (Pemetrexed)
    June 17, Re-evaluation: Mets tumors 'stable', primary tumor slightly grown; new round of chemo Gemcitabine (Trade Name: Gemzar) prescribed; moderate right pleural effusion has developed.
    July 2-8, Hospitalized with edema, water on the lung; Discharged to Hospice care.
    August 2, 2013, Mom slipped quietly into a coma at the end of July and passed on August 2nd.
    My Story

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    Today, Mom and I spent some quiet time out on her back porch. She has a lovely view of a pond with a fountain that attracts geese and other wild life to it's shoreline. I planted some flowers in an old wooden barrel that she loved to plant every summer. We shared a glass of wine, ate some grapes, and talked about the 'good ol' days' when we were all young and growing up and my Dad was alive and well. We both cried and blamed it on our 'dry eyes' and the spring pollen. It was a good afternoon.

    Friday is her 2nd chemo round. We are marching to the appointment like soldiers ready for battle!

    Janice
    Caregiver for Mom, age 89 with Adenocarcinoma Stage IV Lung Cancer
    Diagnosed: March 8, 2013
    Symptoms: Back ache, fatigue, weight loss, painful chest lump
    Treatment: Palliative Care to relieve symptoms; Referred to Pain Specialist on May 3
    Meds: (Update May 27, 2013) Fentanyl Patch, Oxycodene, Folic Acid, Dexamethasone, Decadron IV, Zofran IV, Cymbalta
    April 12, May 3, May 24: Chemo Alimata (Pemetrexed)
    June 17, Re-evaluation: Mets tumors 'stable', primary tumor slightly grown; new round of chemo Gemcitabine (Trade Name: Gemzar) prescribed; moderate right pleural effusion has developed.
    July 2-8, Hospitalized with edema, water on the lung; Discharged to Hospice care.
    August 2, 2013, Mom slipped quietly into a coma at the end of July and passed on August 2nd.
    My Story

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    I'm a bit perplexed today...

    Mom's oncologist has referred us to a Pain Management Doctor (I'm not quite sure I know what that is)...
    In addition, I was told Mom only has one more chemo treatment... which would make a total of 3 chemo's.

    Somehow, that seems way too little to me... sigh.

    I'm reading all of this as a gentle slope towards Hospice care... can anyone else give me some insight into this? and when/where/how the doc's decide Hospice is the next road to travel?
    Caregiver for Mom, age 89 with Adenocarcinoma Stage IV Lung Cancer
    Diagnosed: March 8, 2013
    Symptoms: Back ache, fatigue, weight loss, painful chest lump
    Treatment: Palliative Care to relieve symptoms; Referred to Pain Specialist on May 3
    Meds: (Update May 27, 2013) Fentanyl Patch, Oxycodene, Folic Acid, Dexamethasone, Decadron IV, Zofran IV, Cymbalta
    April 12, May 3, May 24: Chemo Alimata (Pemetrexed)
    June 17, Re-evaluation: Mets tumors 'stable', primary tumor slightly grown; new round of chemo Gemcitabine (Trade Name: Gemzar) prescribed; moderate right pleural effusion has developed.
    July 2-8, Hospitalized with edema, water on the lung; Discharged to Hospice care.
    August 2, 2013, Mom slipped quietly into a coma at the end of July and passed on August 2nd.
    My Story

  16. #16
    Experienced User
    Join Date
    Apr 2013
    Location
    East Stroudsburg, PA, USA
    Posts
    93
    I am so relieved that we have our new Pain Doctor on our team for Mom. The Doctor showed much compassion and allowed both Mom and me to describe her pain status from her earliest discomfort to present. Mom was very apprehensive about going to another Doctor, but now she feels less frightened and more relaxed. She has had a hard week since her last chemo round, and her pain levels have increased dramatically as well. I also have a direct line to the Doctor and will be able to get an immediate response to any emergency pain management issue.

    I've also researched the 3 rounds of chemo that has been prescribed, and this is not unusual for someone in Mom's situation. At this point, my main focus is to keep her comfortable and mange those pain levels as best we can.

    I am however, very worried as she seems to be loosing ground especially over the last week. I'm just praying it's the chemo that is dragging her down.

    Best wishes to everyone on this forum, your loved ones, and especially to those in battle with this challenging illness.

    Janice
    Caregiver for Mom, age 89 with Adenocarcinoma Stage IV Lung Cancer
    Diagnosed: March 8, 2013
    Symptoms: Back ache, fatigue, weight loss, painful chest lump
    Treatment: Palliative Care to relieve symptoms; Referred to Pain Specialist on May 3
    Meds: (Update May 27, 2013) Fentanyl Patch, Oxycodene, Folic Acid, Dexamethasone, Decadron IV, Zofran IV, Cymbalta
    April 12, May 3, May 24: Chemo Alimata (Pemetrexed)
    June 17, Re-evaluation: Mets tumors 'stable', primary tumor slightly grown; new round of chemo Gemcitabine (Trade Name: Gemzar) prescribed; moderate right pleural effusion has developed.
    July 2-8, Hospitalized with edema, water on the lung; Discharged to Hospice care.
    August 2, 2013, Mom slipped quietly into a coma at the end of July and passed on August 2nd.
    My Story

  17. #17
    Senior User
    Join Date
    Jul 2012
    Location
    Antioch, CA
    Posts
    455
    I just read your latest update. I'm so happy to hear you are finding some support from the pain doc. It's a relief to know you're not alone when trying to manage the symptoms that come with this terrible disease.

    I am sorry to read that your mom seems to be declining. Comfort is key. Remember to make memories and to treasure moments. Sending you lots of (((hugs))) as you travel this road with your mom. God bless you. Anj.
    Caregiver to mom, 64 Ovarian Cancer Remission since 1997.
    6/19/12 Annual blood work - CA125 came back elevated.
    6/21/12 CT abdomen, RUL 2.8cm spot, LLL 5mm spot, lt. adrenal gland mass 8.3cm, rt. adrenal gland mass 4.6 cm.,
    6/28/12 Brain MRI-Clear,
    6/29/12 Lung Biopsy=Stage 4 NSCLC.
    7/11, 8/3, 8/23, 9/13/12 Chemo (Carb/Alimta).
    CT Scan 10/4/12 1 of 4 tumors decreased. 20% Kidney function. Blood transfusion
    10/9/12. Mets to liver.
    12/11 chemo (carb/taxotere) continued thru March.
    March 27, 2013. Told no more chemo, cancer now in the brain, to call out Hospice. Set up hospice March 31, 2013. Mom passed April 12, 2013. She will always be in my heart, never forgotten and always loved. May we reunite soon....after only a temporary separation!

  18. #18
    Senior User
    Join Date
    Mar 2013
    Location
    Athens, Greece
    Posts
    225
    Janice, I am glad that the pain doctor has helped and it's very good to hear that your mom likes him as well. It is very important for our loved ones to feel comfortable with their doctors and have trust in them. I am sorry though to hear that your mom is not doing well, it may well be the fatigue from Alimta. The fatigue and exhaustion was terrible when my dad was taking Alimta and it was the major reason why it was discontinued, but within a couple of weeks from discontinuing Alimta, he improved very much. If this is the case, given some days or weeks she may bounce back, at least in terms of her energy levels.

    I hope that your mom stays comfortable and does not have to deal with any pain.
    Mary

  19. #19
    Experienced User
    Join Date
    Apr 2013
    Location
    East Stroudsburg, PA, USA
    Posts
    93
    It's been a few weeks since I did an update here. Mom had her last session of Chemo on May 24th. She is scheduled for another CAT scan on June 17 to determine the her next steps in treatment and to determine if she goes another round of Chemo or if radiation will play a part in her care. Her pain medications have been increased. She is depressed and has also been put on anti-depressants to help her cope with her increasing anxiety and pain issues. She is putting up a battle, one that she knows she is going to eventually loose.

    I am also making arrangements for my siblings to come to visit her over the next several weeks. We want to create some long lasting memories. On the bright side... she did make it to her 3rd Great Grandchild's Birth last week, which has made her so happy. Our new baby girl Emma will also be visiting Mom over the summer to cheer her up and bring her some joy.

    My continuing prayers to everyone on this forum who is fighting this beast or caring for someone who is.

    Regards,
    Janice
    Caregiver for Mom, age 89 with Adenocarcinoma Stage IV Lung Cancer
    Diagnosed: March 8, 2013
    Symptoms: Back ache, fatigue, weight loss, painful chest lump
    Treatment: Palliative Care to relieve symptoms; Referred to Pain Specialist on May 3
    Meds: (Update May 27, 2013) Fentanyl Patch, Oxycodene, Folic Acid, Dexamethasone, Decadron IV, Zofran IV, Cymbalta
    April 12, May 3, May 24: Chemo Alimata (Pemetrexed)
    June 17, Re-evaluation: Mets tumors 'stable', primary tumor slightly grown; new round of chemo Gemcitabine (Trade Name: Gemzar) prescribed; moderate right pleural effusion has developed.
    July 2-8, Hospitalized with edema, water on the lung; Discharged to Hospice care.
    August 2, 2013, Mom slipped quietly into a coma at the end of July and passed on August 2nd.
    My Story

  20. #20
    Top User emilyloveslime's Avatar
    Join Date
    Sep 2011
    Location
    San Francisco
    Posts
    626
    I'm sorry to hear that she is depressed. It's a natural route after a diagnosis like this one, but it sucks. I'm glad that you guys have some proper treatment and drugs for that.

    Keep us updated on the scans. We'll be rooting for you guys!

    Em
    Boyfriend, 25, dx'ed Stage IV NSCLC 6/29/11. Malignant pleural effusion, liver/spine/lymph mets. Adenocarcinoma w/unknown primary! So confusing.

    Jul '11: 2 cycles Carboplatin/Alimta (failed)
    Oct '11: Docetaxol/ramucirumab/Xgeva/Neulasta
    Dec '12: Liver met growth
    Jan '13: 10+ brain mets, 2 wks of WBR
    Mar '13: CDK 4/6 inhibitor trial (failed)
    May '13: Tested ROS1+
    June '13: Xalkori clinical trial for ROS1+
    Aug '13: Liver mets gone, lung spots gone. Doing great so far!

    Thread: http://www.cancerforums.net/threads/19136

 
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