A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Results 1 to 7 of 7

Thread: Doctor is expert in Palliative care - should we be worried?

  1. #1

    Doctor is expert in Palliative care - should we be worried?

    My husband's in a very good clinic, with a team for everything. The pain has been a problem - hydromorph and oxycodone only helped a bit - the doctor from the pain team prescribed a Fentanyl patch, which is a miracle. The Pain team - they are actually called the Palliative care team. My husband asks, does this mean i'l be going into a hospice soon? I dont think so. But does the term palliative mean, they already know he'll be dying soon and its just a matter of managing the pain? He's only had 3 chemo treatments, with a CT scan around the corner. I dont want to look like a dummy. But the term palliative does suggest preparing for the end. I'd be interested in knowing if in other hospitals the term is used for a department that looks after pain - regardless of the patient's stage in diagnosis
    October 21012: Husband age 50 diagnosed with Stage IV pan cancer with mets to liver. 12 treatments of Folfirinox. Chemo break June 2013 - March 2014. Back on Folfirinox for 4 treatments, then cancelled. CT Scan, ultrasound, biopsy only confirm cancer is back but no treatment recommended. Another scan in a week. Radiation:5 treatments in 4 days, stereodatic radiation (aka cyberknife) late July. No effect. September 2 weeks in hosp with blood infection. Oct: 6 chemo (Gem) No effect. November - at home, me at home full time. Slow decline til Nov 20 when admitted to palliative care. Body and mind ravaged by disease, toxins, my beautiful Carlos passed away on Thurs Nov.27 . May he rest in God's gentle hands in eternal comfort.

  2. #2
    Palliative care does not by itself signify anything in terms of prognosis. Their job is to alleviate, or palliate, symptoms. They often are utilized when the existing providers do not know what the best management options are for dealing with symptoms. Period, end stop. Nevertheless, to not be accused of having completely rose-colored glasses, having uncontrolled symptoms as a result of cancer is less desirable than having no pain, since that means that the cancer may not have responded as well to treatment as hoped.

    Understandably, many palliative care providers also care for patients on hospice, which often have a similar set of needs, so there is indeed a natural transition when needed, but there is nothing inherently grim in having palliative care specialists involved. In fact, lung cancer patients at MGH who were referred earlier to palliative care had improved quality of life and lived longer (!) than people who were treated with standard of care.

  3. #3
    moms doctor has called her treatments pallative from day one because cancer is usually an ongoing problem. usually used in treatment of any ongoing problem
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    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.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    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!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    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)
    Nov/22/12-blood transfusion
    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.

  4. #4
    Palliative means comfort. With ovarian cancer which I'm familiar with, when it's clear the cancer won't ever go away, the goal is to manage the cancer, usually with chemotherapy. I know people who've been getting "palliative" chemo treatments off and on for ten years and are leading normal lives. To me, it simply means care that is meant to improve the patient's quality of life. Where chemo is concerned I'm hoping my treatments extend my life as well and I think they will, but my treatments are mostly for symptom control and to the disease stable if possible.

    I think the simple way to put it is that palliative care is not curative. In my first series of chemo treatments the goal was to cure. We know now we can't cure it so all my treatments now are palliative. I need no pain control other than an occasional Vicodin and I'm a long, long, long way from hospice.
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking.
    - 2010 - laparoscopy showed inoperable recurrence, so started chemo.
    - Frontline chemo - carboplatin and cyclophosphamide, six cycles
    - Additional chemo regimens: Avastin - ten cycles; Weekly Topotecan - 4 cycles.
    - Spring 2012 developed pleural nodules. Topotecan plus Avastin - 1year.
    - April, 2014, had surgery to remove Aspergillus infection from right lung.
    - September, 2015, started on Megace because my tumors are PR positive. Stopped Megace after three months.
    - September, 2016, hospitalized for shortness of breath and back pain.
    - September, 2016, respiratory failure reversed with prednisone. Maintaining on 50 mg Prednisone per day and supplemental O2.
    - October, 2016 left hospital with no supplemental oxygen. Feeling great! Will start tapering off the prednisone Oct. 10.

  5. #5
    Thank you all for your insight. I tend to read into everything. Pan can is not curable but I guess they want to alleviate pain whenever possible.
    October 21012: Husband age 50 diagnosed with Stage IV pan cancer with mets to liver. 12 treatments of Folfirinox. Chemo break June 2013 - March 2014. Back on Folfirinox for 4 treatments, then cancelled. CT Scan, ultrasound, biopsy only confirm cancer is back but no treatment recommended. Another scan in a week. Radiation:5 treatments in 4 days, stereodatic radiation (aka cyberknife) late July. No effect. September 2 weeks in hosp with blood infection. Oct: 6 chemo (Gem) No effect. November - at home, me at home full time. Slow decline til Nov 20 when admitted to palliative care. Body and mind ravaged by disease, toxins, my beautiful Carlos passed away on Thurs Nov.27 . May he rest in God's gentle hands in eternal comfort.

  6. #6
    As per previous, palliative just means comfort care. There's no reason a cancer patient can't get that while pursuing other treatment aimed at remission or cure. A palliative care specialist is likely the best equipped for pain management regardless of overall prognosis.
    Dxed with Stage IB2 cervical cancer by one doctor and IVB by another in 10/11. Finished six weeks of pelvic chemorad in 12/11. Lung tumor found in 10/11 dxed as IB NSCLC in 8/12. Dec. '12 scan showed clear pelvis, no growth in lung tumor and new activity in remote lymph nodes. Is it a Stage I and a Stage IV, three Stage Is, or a cured cancer with something benign going on? Lost interest and went off the reservation after a year of unsuccessfully fighting for a good biopsy.

  7. #7
    Quote Originally Posted by sdrutledge View Post
    Thank you all for your insight. I tend to read into everything. Pan can is not curable but I guess they want to alleviate pain whenever possible.
    Absolutely they do. They kept me comfortable and pain free during my curative tx. I went into hospice care immediately upon finding no more curative was available other than trials. I can't say enough good about them. Jody
    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!

 

Similar Threads

  1. Palliative care only....
    By Hope2012 in forum Liver Cancer Forum
    Replies: 28
    Last Post: 02-02-2012, 08:11 PM
  2. 76 y.o. - Whipple or palliative care?
    By fivepoints in forum Pancreatic Cancer Forum
    Replies: 3
    Last Post: 10-01-2009, 02:38 AM
  3. Chemo or Palliative care?
    By Tam in forum Pancreatic Cancer Forum
    Replies: 1
    Last Post: 09-08-2008, 02:47 PM
  4. Palliative Care ? Helping YOU care for your loved one
    By Lorraine Kember in forum Coping and Support
    Replies: 0
    Last Post: 08-13-2005, 04:02 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •