Oligo progression

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Oligo progression

by Tootsie7 on Thu Jan 31, 2019 09:04 PM

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Hello. I am in a very complicated situation. In a long distance affair of 2 years with the love of my life for 29 years(long story). He was diagnosed with Oligo in 2003, had total resection and chemo. I don’t know the grade. He had recurrence in 2017 with resection, chemo & radiation due to this tumor being more aggressive. In October he had something on mri that was thought to be rad necrosis, pet scan was negative so he was schedule for follow up mri in a month, well....tumor is back, more aggressive & inoperable. He has started on keytruda trial in dec. Has since experienced right sided weakness and requires cane to walk and short term memory loss. Some days he does not remember speaking to me and calls and we have same conversations. He is on steroids also. Does anyone have any experience with this? What can I expect? It is killing me that I can not be with him. I feel as if the man I know and love with all of my being is “gone”. He says he’s fine everyday, when I asked if prognosis he says doctor hasn’t said. I know he is trying to protect me, but I don’t want that, I want to walk this journey with him as much as I can despite the distance & situation. Any advice or information would be greatly appreciated.

RE: Oligo progression

by Mack1994 on Mon Feb 11, 2019 06:55 PM

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On Jan 31, 2019 9:04 PM Tootsie7 wrote:

Hello. I am in a very complicated situation. In a long distance affair of 2 years with the love of my life for 29 years(long story). He was diagnosed with Oligo in 2003, had total resection and chemo. I don’t know the grade. He had recurrence in 2017 with resection, chemo & radiation due to this tumor being more aggressive. In October he had something on mri that was thought to be rad necrosis, pet scan was negative so he was schedule for follow up mri in a month, well....tumor is back, more aggressive & inoperable. He has started on keytruda trial in dec. Has since experienced right sided weakness and requires cane to walk and short term memory loss. Some days he does not remember speaking to me and calls and we have same conversations. He is on steroids also. Does anyone have any experience with this? What can I expect? It is killing me that I can not be with him. I feel as if the man I know and love with all of my being is “gone”. He says he’s fine everyday, when I asked if prognosis he says doctor hasn’t said. I know he is trying to protect me, but I don’t want that, I want to walk this journey with him as much as I can despite the distance & situation. Any advice or information would be greatly appreciated.

Hello Tootsie7,

I was diagnosed in 1994 with oligodendroglioma grade 2, located in the right fronatal lobe, had total resection and was recurrence free for six years, recurrence was within the resection cavity of the prior surgery, had another resection and was put on temodar and was progression free for ten years, and then another recurrence and another resection, those three times the pathology came back that it was still a grade 2. In December of 2016 my MRI showed recurrence and this time the neurosurgeoun said it was a higher grade, an oligodendroglioma grade 3, confirmed by pathology after another resection. 

I continued to work until I retired in June of 2017, I then underwent 33 radiation treatments that targeted only the area of the cancer, followed by six cycles of chemotherapy consisting of gleostine, the first day of the cycle then 7 days later I would take lomustine for 14 days and then when the lomustine was finished 7 days later I would receive vincristine IV. The effects of the chemo are accumulative and I was quite ill with fatigue, weakness and loss of appetite, that I lost almost 40 lbs.

Your boyfreind may not be lying to you when he states that the Doctor may not have said anything about his prognosis, or like you said he may be trying to protect you and still further he may be forgetting, as you state he has short term memory loss.

I,m a retired registered nurse so I have always strongly advocated for myself, to the point that my Doc's would become aggravated, I now have an Neuro-oncologist that is very understanding and answers all my questions.

I don't know if your boyfriend goes to his appointments alone, if so with short term memory loss I think it would be a good idea to have someone go along that could advocate for him and be able to comminucate back to you, if he is agreement to do so, most hospitals have patient advocates,usually a nurse or a social worker and with your boyfreinds permission they could communicate with you as to the whole of his situation.

I would recommend that you call his Doctor and explain your curcumstances, most likely you would have to first communicate with the doctors administrative assistant, it will probably mean a lot of phone calls and even e-mails to get you on board as part of his "team"

I deeply empathize with your situation, but I .

beleive your love for him will see you through.

Whishing you the best during this challeging time.

Mack1994.

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