I need to vent.

When my 71 year old mom was diagnosed with Stage IV NSCLC in late September, we were told that, with treatment, she would improve and could lead a "new normal" kind of life.

At first, her assigned docs at her local community hospital were very attentive and involved. As her condition became more complicated (through discovery of additional tumors, infections and other issues), and treatment became more complicated (some of it due to the inability of the community hosp. to provide radiology to in-patients), her "docs" have become completely inaccessible, and barely involved. As a result, her condition has grown worse and worse. At this point, she is not ambulatory, her pain meds/sedation have left her unable to speak for herself.

In the past two days, my dad and I have been desperately trying to get answers about my mom's condition (one of the associates of my mom's "docs", actually told my dad via cell phone that he "doesn't know what to do next" and left it at that. There was no talk of hospice or any next steps or anything like that. In fact, unbelievably, the hospital social worker asked my dad which rehab center (!?) she should be transferred to--obviously with no idea of my mom's true condition. My dad and I are completely devastated. My mom is incredibly sad, and cries even through her sedation.

In the beginning, I did not want to inject my opinions, as my parents seemed very satisfied with mom's care. I gradually became suspect of the handling of her care, and started too slowly to express my suspicions. I live an hour away (without traffic) from my parents, and could not be continuously monitoring the situation (plus, her docs were impossible to get a hold of).

My husband and I are working with great urgency to get her into a major university hospital in our area. We have some connections that can assist us in getting her transferred within the next two days.

Our prayer is that she receives top quality care, and even if she does not make it, at least we would know that it was not because we gave up on her.

I can't help but think about how it is BECAUSE of the inefficacy of her care that she is in this condition. I would have thought that if the docs could not handle this complicated of a case, she would be referrred to another doc/hospital/cancer treatment center much earlier.

We are all sad and incredibly heartbroken-- the emotional toll of all this in almost unbearable. If you are so inclined, please keep my mom (and dad) in your prayers as my husband and I continue to work on her behalf.

Thanks for reading,
Gina

No apology needed for venting here! I understand completely and hope you get exactly what you and Mom need right now!! It is sad that doctors can be like this sometimes!!

Hugs and Prayers and thoughts to you and family right now! Be tough and strong.

_________________
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!!

Gina, I agree with you. The sudden shift in care you're getting isn't acceptable. Make those calls to that University Hospital today. This happens far too often. She deserves morethan that. There IS help and HOPE. Make the move.

Hi Gina, I'm glad you came to vent. If you do nothing other than get Hospice involved, that would be a good thing. They administer pain care with expertise, and are very good at giving their patient quality of life. And that is NOT the doctor's call. You can call them in at any time. If she is not in treatment, she should be in their care.

I pray for you all and hope and pray this situation gets better immediately.

MI Judy

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

Yippee!!! My mom is going to the Lurie Cancer Center at Northwestern (Chicago)!! My mom can now get the care (and attention) she deserves. posting.php?mode=reply&f=38&t=45977#

Thank you all of you for your support. I really do appreciate it. I feel as though angels are guiding the way here, both human (in you) and celestial.

Peace,
Gina

OK, I tried to apply a smiley in the first paragraph. I don't think it worked.
Oh well.
I am feeling happy now, though!

I'm really happy for you and your family. I'm sure she will get the care she needs at Northwestern. Outstanding hospital and outstanding cancer care.

Muriel

_________________
Dx NSCLC 5/03. Surgery UR lobe. Staged as 1B. Chemo (taxol & Carbo)9/15/03 - 11/13/03. Wonderful CTs until Nov 04. Surgery 11/27/04, again staged as 1B. Chemo (Cisplatin and Gemzar) 2/05 to 6/05. Good CTs and PET since chemo.

Hi Gina,
Welcome to LCSC,what a sad story you share,well at least after further posts you have a happy outcome to share.
I know the devastation a LC dx came bring to a family,and I have found time itself is a great healer.There are a lot of survivors at Stage 4,so dont lose heart,one day at a time as the saying goes.
Please pass onto your Mum my very best wishes for a successful outcome as her treatments progress.Do keep in touch and let us know how she is doing.

_________________
Regards,
Eric Byrne

To read my story, please follow the link : http://lungevity.org/l_community/viewtopic.php?t=43268

Please let us know how it's going.

Hugs,
K

_________________
- Katie Brown, Co-Founder of LCSC- Director of Support & Advocacy

18 yr cancer survivor.
Certified Patient Navigator
www.iamkatiebrown.com


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


facebook http://www.facebook.com/lungevity

Great news Gina, always be the squeaky wheel. All the best to you and your mom. Way to go.

ACK! Dang paperwork...

Yes, it's the worst. Hope it's leading to good things though.

Judy in KW

_________________
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.

She's on her way! So relieved... for now.

The last few days have been extremely difficult.

Though the level of care, expertise and communication have been outstanding, my mom's cancer had spread so much that treatment of any kind would not be of any benefit at all. The agitation alone of radiation therapy would be detrimental.

In the last couple of days, she has been moved to palliative care (within the hospital, thank goodness). She is in so much pain that she has been put on very high doses of morphine. Doc say she has probably days left... She is still very cognizant (when she is alert) that we are there, and all we (and the hospital) can do is keep her company and comfortable. It breaks my heart to see her this way, since I can tell she is still very much inside her failing body.

I pray she passes without pain and in peace.

Thanks for all your support, angels all of you,

Gina

P.S.: I will continue to lurk the boards and offer support to anyone who needs it. I can also act as a buddy, and will work for Lungevity, fighting to raise awareness and funding for the important research that needs to be done!

Oh Gina I hate to read this news this AM!! I know how your heart is hurting right now. my thoughts and prayers are with you and Family this am and always. please keep us posted and we are always here to help[ you no matter what!

_________________
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!!

Gina,

Well, I'm thankful that she is getting good care and pain control. I'm so sorry for the situation you are all dealing with.

I'm glad you want to stay at the boards.

MI Judy

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

Oh Gina,
Such a difficult time. Many of us understand and have walked this path. We are all here for you.

Sending peaceful thoughts and prayers for you and your mom.

Hugs

_________________
- Katie Brown, Co-Founder of LCSC- Director of Support & Advocacy

18 yr cancer survivor.
Certified Patient Navigator
www.iamkatiebrown.com


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


facebook http://www.facebook.com/lungevity

Gina, sorry I've been absent so long since this. Rare family time with us all together. I hope the holiday passed for your Mom painfree and in the comfort of her family. I know how hard it must be for you. Thanks for wanting to stay onboard. We need newcomers as others drift away over time.

Judy in KW

_________________
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.

Well, mom passed on Monday. My dad and I thank God she is finally free of her ravaged body and pain. As much as the fine staff at Northwestern tried, her pain managed to come through the huge doses of Morphine she was given.

She is now at rest in the light with her mom, dad, and brother. One of the most difficult things for us to process was the lightning-fast speed with which this cancer did its damage and took mom. Even though we watched her die, it is still a bit unreal, especially when I go to my parents' home. She is everywhere there. (Sigh.)

Again, thank you all for your support and kind words,

Gina

Hi Gina,
I am so sorry to read about your Mums passing,please accept my sympathy.This was so sudden,perhaps in view of her discomfort,God has intervened.
I do hope you will continue to visit us here in the future,my very best wishes for you and your family.

_________________
Regards,
Eric Byrne

To read my story, please follow the link : http://lungevity.org/l_community/viewtopic.php?t=43268

My thoughts Prayers and condolences Gina. We are always here for 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!!

My condolences to you and your family. I can "hear" what a huge empty space her passing will leave in your life.

Judy in KW

_________________
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.

Very tough to lose a Mother. You will hear her voice for years to come as you face each decision in your life.

I wish you and your Dad peace and strength in the coming times.

_________________
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.

I'm so sorry.

_________________
- Katie Brown, Co-Founder of LCSC- Director of Support & Advocacy

18 yr cancer survivor.
Certified Patient Navigator
www.iamkatiebrown.com


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


facebook http://www.facebook.com/lungevity