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Thread: Inoperable GBM

  1. #1

    Inoperable GBM

    Hi this is my first post.

    In December 2016 my dad was diagnosed with GBM and given 3-6 months to live. It is now almost been 2 months and he is gradually getter worse. He has had a bed placed downstairs as he can longer reach upstairs. He struggles to walk as he wobbles all over the place and his legs are weak from the drugs they give him. What I wanted to know was what are the signs of being in the last few weeks? He still eats and drinks loads because he is on steroids they make him hungry. He can't have any treatment as he has already had chemo for lung cancer about 6 months back. Do you think he is coming to the end and if so how should we cope with it so that he is comfortable in his last weeks? Any replies will be appreciated,thankyou xx

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Anne, I am sorry to welcome you here under these circumstances. I moved your post to the brain tumors forum, as your dad's situation has some factors which will be unique to brain tumors. He will set his own survival curve, but if you are seeing a definite decline, and knowing that treatment is not planned, it is best to begin planning for further decreases in his abilities. It would be a good time to contact a hospice service and explain his condition to them. They are amazing people and can be of great comfort and assistance at such a time. Others who have dealt with very similar situations will provide advice based on their experience.

    Edit: If dad is also in the UK, contact with his NHS consultant would seem to be in order.
    Last edited by po18guy; 01-28-2017 at 08:07 PM.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    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, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. 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 - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. 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) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell 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 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measureable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    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.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial of drug KD025, a ROCK2 inhibitor that is believed to help with chronic GvHD.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Having had both lymphoid and myeloid malignancies lend a certain symmetry to the journey.

    Believing in the redemptive value of suffering makes all the difference.

  3. #3
    Super Moderator Top User
    Join Date
    Dec 2011
    Hi Anne, welcome. I'm very sorry to hear of your dad's GBM and his worsening situation.

    It can be very difficult to predict how long the endstage will last, but one thing we've generally found is that the length of time does relate to the person's age and overall physical condition.

    If he's still walking around then he's probably not in his last days although this can vary hugely from person to person. There's a tendency to eventually lose mobility, although this doesn't happen to everybody. (There isn't anything that happens to everybody.) From the time my sister stopped being able to move about on her own to the time that she died was about two months; she was 45 and in excellent physical condition.

    Right now, if you haven't done so already, you might want to get him a bedside commode because a lot of people have bad falls in the bathroom, where there are so many hard things to hit on the way down, or in getting to the bathroom.

    Here in the US, bedside commodes cost about $100 and insurance sometimes covers it. In other countries, hospice will often supply and deliver this, as well as the other comfort items I'm about to mention.

    When getting out of bed is no longer possible, a hospital bed may be necessary for purposes of sitting up. If you get one of these be sure to ask for an alternating pressure mattress pad as well, to prevent bed sores. You will also probably need incontinence bed pads at that point. The washable ones are better than the disposables; cheaper in the long run and also more comfortable.

    A tray table that can be used in bed is also useful. I wasn't able to find one in any store so I made one out of a piece of plywood, some molding strips, some dowels, and a no-slip rubber pad.

    You'll also need family members or friends with strong backs, as just moving him around may become quite difficult later on with loss of muscle control.

    If it's a left-side tumor, there's likely to be loss of language to the point where communication is very difficult. With my sister, I was the only one who could understand what she was saying toward the end. If you've got someone who can act as translator for everyone else that's great; otherwise you may need to work out something nonverbal for communication such as picture cards that can be pointed at. (Possible pictures: food, drink, bathroom, water, I love you.)

    About the only good thing that can be said about the endstage of this beast is that it is almost never painful. Oh, and also the person with GBM will nearly always recognize loved ones right up to the end, even if only by voice and touch.

  4. #4
    Moderator Top User
    Join Date
    Mar 2012
    Anne, two locations please: which country are you in and where is the tumour located, then we can give more advice.
    Wife died from a GBM, November 2012. The full story in this thread

  5. #5
    Hi sorry for the delay. I am located in the U.K. and the tumour is located at the back of the cerebrum. In the past few days he has been struggling to get up and it almost completely bedridden. He is experiencing extreme dyspagia and can hardly keep any of his meals down. We are so devastated and feel like he may be coming to the end.

  6. #6
    Super Moderator Top User
    Join Date
    Dec 2011
    Have you got hospice services on board? They should be able to help you get the paraphernalia for dealing with his reduced mobility. If at all possible you'll want to avoid him falling.

  7. #7
    We have the Macmillan nurse seeing him 3 times a week. He has good days and bad days such as today he has been walking round and making breakfast, but some days he struggles to get out of bed.

  8. #8
    Moderator Top User
    Join Date
    Mar 2012
    In his condition, he should be under an NHS palliative care package, which by now should be under supervision by the hospice (they know much better how to make the patient comfortable in the last stages than hospital doctors). This can include carers coming in up to three times a day, and the district nurses will supply a reclining hospital bed with air mattress if required. If you are not getting this speak to your GP or the hospice urgently. The Macmillan nurses are a charity, and this will be in addition to this.

    Also you should be getting attendance allowance, which is not means tested (it has another name if he is under 65). As he is a terminal patient with a short prognosis, this can be fast tracked so you get the money within days. You need to get your GP to sign a form. Details here

    Is he under the care of a specialist neuro oncologist (brain tumours are not like other cancers). Did he receive chemo (Temodal) and radiotherapy? Is he getting steroids (dexamethasone) to control brain pressure. That does have side effects.

    As for the last stages, see this thread
    Wife died from a GBM, November 2012. The full story in this thread

  9. #9
    Unfortunately in the early hours of this morning, my dad passed away. We're deeply saddened but grateful he's not suffering anymore.

  10. #10
    Super Moderator Top User
    Join Date
    Dec 2011
    I am so sorry to hear of your loss.


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