12-17-2012, 07:15 PM
Jody, thinking of you too and hoping you had a great getaway last weekend with the hubby and hoping you were able to get all the hospice business back on track. Ready for Christmas? ((Hugs)) 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!
12-21-2012, 02:04 AM
Missing your posts and thinking about you
MOM-My best friend. 76 years old, COPD, atherosclerosis, high blood pressure, congestive heart failure, smoker. Hospitalized 4/12 - Sick, fever, terrible coughing, extreme fatigue. X-rays and cat scan showed 2 areas on left lung (ULL and LLL)-diagnosis pneumonia. Hospitalized for 5 days. Was on antibiotics for weeks. Primary care doctor kept watch, sending her every month for x-rays May through August. Mass on ULL gone but LLL still showed shadow. CAT scan with contrast/September. LLL shadow on CAT scan. October/PET scan ordered, LLL mass lit up and lymph node on right side of chest, hilar area. Bronchoscopy/November 2012/preliminary tests shows Adenocarcinoma in lymph nodes, didn't get a good sample from LLL but they think that's where the primary tumor is. We are waiting for her first oncology appointment 12/6/2012. My mom is very depressed. Her oncology appointment cannot get here soon enough.
12-21-2012, 10:58 AM
Thinking of you and am missing you.
12-21-2012, 01:37 PM
Just popping in to let you know that you are in my thoughts and prayers. Let us know how you are doing if you feel up to it!
Mom's xray July 2011 looks suspicious, CAT scan July 2011 SCLC ES diagnosed August 2011
Etoposide Carboplatin begins august 24th 2011
CAT December 2011 lung tumors gone or greatly reduced, liver tumor not detectable PCR January 2012 CAT March 2012 more shrinkage
CAT July 2012 tumors growing July 2012 Topotecan CAT October 2012 Liver tumor has grown October 2012 Taxotere begins CT scan - no growth - brain mets, WBRT in February, CT Scan in March 2013 shows more growth, begin Gemzar.
Mom passed away July 8, 2013.
12-21-2012, 05:10 PM
Hello everyone and happy holidays. My kids and their families are stopping in tonight for Christmas dinner and gift exchange. I bought five of those Hall Mark recordable books to be shared through the years. I know they won't be little forever, but they will always have them. The kids are bringing in the food so there isn't a lot for me to do. We had our first snow flurries here today. Yippiee...I don't mind snow. It's the bitter cold! Brrrr. j
May The Odds Be Ever In Your Favour. Born 1960. Diagnosed 4/2011 with one tumor, LUL, NSCLC. Tumor size 1.1 inches. Thoracic surgery 6/1/2011. No action taken. Eight weeks of radiation and chemo. Carbo and Taxol. Follow up with four rounds of Carbo and Alimta.
December 2011 CT scan shows all clear.
April 2012 CT scan shows all clear. July 2012 had several x-rays taken at the chiropractor for shoulder pain. Took them to the onc and nothing suspicious noted. See them again in Oct.
October didn't work out. Pain in the left shoulder continued to worsen and lymph nodes in the supraclavical swelled so I called the onc and they bumped the regular scan up to September 19 and we went for the results on the 24th. The tumor is back and the spread is extensive. Option 1: Try targeting chemos that may work and then on to clinical trials. These would give me about a year or so if the cancer responds. Option 2: Do no treatment and let nature take its course. This will give me six months give or take. As good as I feel right now, Iím going for door #2 and will continue to live well and enjoy myself until I donít. Iíll keep you posted. Live it up everyone!
7 months into hospice and palliative care. It has been a very good relationship with the organization as a whole with a minor glitch. April 2013 spent the night at hospice facility, PICC line inserted for morphine drip. I said I wouldnít but, had a hospital bed delivered. Started 10 rounds of palliative radiation to shrink the neck tumor. Busy month for me!
I've taken a couple of nasty falls this last week. (first of & mid-May) Right on the cancer shoulder. So I have a life alert necklace on me now. I wish I could get my hands on a small scooter!
There is another node swelling on the other side of my neck. Still small.
April51's (Jody) daughter posted that her Mother's journey in this world had ended on July 8th 2013.You touched so very many lives. Soar high Jody!
12-21-2012, 05:34 PM
Thanks for checking in Jody. Merry Christmas!
At the time - 46 yo male, non-smoker
Sept 2012 - DX - One tumor NSCLC Squamous Cell Right Upper Lung
Oct 2012 - TX - Treatment similar to Pancoast Tumor - Pre-operation radiation and chemo (5.5 weeks of IGRT and 3 cycles of Cisplatin and Etoposide)
Dec 2012 - Surgery - Remove RUL, Surgical Pathology Report Adenocarcinoma T2N0M0
Now - Wait, watch, & pray
12-21-2012, 06:10 PM
Amen! A very merry Christmas to you and yours!
07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. 50+ tumors with BMI
08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
02/09 2) Relapse.
03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles
07/13 3) Relapse, 4) Suspected Mutation.
08/13-02/14 Romidepsin increased, but stopped due to ineffectiveness. Watch & Wait.
09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
10/25/14 Clinical trial of Alisertib/Failed.
01/12/15 Belinostat resumed/Failed 02/23/15
02/24/15 Pralatrexate/Failed 04/17/15
04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
BMB reveals 5) Myelodysplastic Syndrome (MDS), a type of bone marrow cancer.
07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
07/16/15 Total Body Irradiation.
07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
08/04/15 Engraftment official - released from hospital.
08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
09/26/-11/03/15 Prednisone to control GvHD.
05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
09/16/16 Three skin punch biopsies.
11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
To date: 18 chemotherapeutic drugs in 9 regimens (4 of those drugs at least twice), + 4 immunosuppressant drugs.
I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.
"What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
- Hebrews 11:1
12-21-2012, 06:29 PM
Merry Christmas Jody!
73 y/o MIL- dx Ex Stage SCLC 4/30/12
Liver biopsy 06/21/12
Mets to lymph nodes & spine
July 4, 5, 6. Chemo
July 16, in hospital for pain
July 18. CAT scan.Brain ok,Spine has mets
July 23-27 radiation to prevent fracture
Chemo Aug 8, 9, 10
Chemo Aug 29, 30, 31
Chemo Sept 26,27,28
Cat Scan Oct 3, Oncologist Oct 15
More mets, no further treatment
Jan 8/13- CT confirmed large brain mets
Feb 19, 2013 Carol passed away with all of us at her side.
12-21-2012, 07:13 PM
Hi Jody and Merry Christmas to you and your family! May the season give you all goodness, I am glad to hear everyone is gathering to be with you. I hope you are feeling reasonably well and that you will have much time to share memories with those grandkids...God bless,
When the world says, "Give up," Hope whispers, "Try it one more time."
Follicular lymphoma diagnosed August 08, Stage 1
2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
Restaged to Stage 3 May 2010
Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
Significant progression detected in PET scan - December 2012
Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
June 2014 - started 2 year maintenance Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence asap.
12-21-2012, 08:41 PM
happy holidays to you too April- flurries all warm and cozy with family doesnt get any better than that.
April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
port-port rejection-port removed 1week.
Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
transfusion central line TPN 1 month.
oct-09-surgery tumor ,colon and jejuneum removed.
xeloda reduced. severe dehydration,heart attack.
mar-11 return to original site-oxyplatin,5fu
dec-30-back to chemo erbitux camtosar
Jan-16 injections neulasta and aranesp
feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
starting a regimine of celebrex
aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
sept/10-12-good urologist report one kidney functioning well for now.
oct/23/12-chemo pill Stivarga(regorafenib)
dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
Feb/21/13 neulasta injection
Feb/22/13-blood transfusion. still taking stivarga.
mar/20/13-arenespt injection rehydration and magnesium IV
mar/21/13-acute renal failure-kidney infection
april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
swollen hand no apparent reason black spots in vision off and on. both cleared up.
may/22/13-home oxycodone for pain shoulder neck arm
june/1/13 pain subsided off oxy onto aleve
june/09/13-pain back off aleve on vicodin
june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
june24/13-last day of radiation-on steroids
july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
july 23/13 vicodin cut in half blood transfusion.
sept/6/13-off all pain meds since late aug
scan results fracture in spine mid back
sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
nov/7/13-edema both legs and one arm on lasix since oct.
nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.