Just starting this journey and feeling lost

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Just starting this journey and feeling lost

by WendyC on Mon Feb 01, 2016 05:17 PM

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My Boyfriend was diagnosed with a GBM IV the beginning of December. He had surgery and they could only remove about 40% of the tumor. The tumor is located on the left side and has affected his speech and right side. We finally began radiation and Chemo January 26th. He seems to be holding right now. Before treatment started I was watching him deteriorate before my eyes. When we left the hospital he passed his PT test, now he wouldn't pass, dragging his right leg and barely able to hold anything. Can someone tell me what exercises he can do to help his right side? We will start the Optune after his 6 weeks of radiation and I am hoping that we will get infront of this tumor. If anyone has advice, I welcome it... I am tired of constantly being in shock and I want to figure out how to handle this, own it and live the way we want to not the way this tumor is making us live. 

RE: Just starting this journey and feeling lost

by meluvhubby on Tue Feb 02, 2016 01:01 AM

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Hello Wendy,

I am sorry you have to go through this. My husband was diagnosed March 2015 and it has been a scary rollercoaster non stop. I understand the need to have a heads up of what to expect....#1 ask his doctor for physical and occupational therapy...they will help with weakness and teach you and him how to preserve independence...i.e., they taught him how to put clothes on with one hand (his left side is nonfunctioning) and he can walk with a hemi walker for exercise once/twice a day to the bathroom (which if anything helps work the muscles because if not he will muscle waste which can bring on another set of problems)....also if he has lost his right arm functioning dont let his arm just hang it can slip out of socket from dead weight and muscle weakness (muscles hold the arms ball in the  shoulders socket)...unfortunately Wendy the tumor is in charge now until you can get it contained...my husband who had 75% removed did six weeks radiation and chemo and then Temodar (chemo pill) every 28 days until it proved not to work anymore (he grew 3 new tumors in November despite treatment) and those 3 new tumors tripled in size in 3 weeks...we switched treatment to Avastin and CCNU pill...its shrinking the tumors but the problem is once you stop the treatment because tumors are shrinking (the side effects are horrible...doesnt talk much just stares most of the time, yet different for diff ppl) once stopping this treatment the tumors are likely to come back raging...if this doesnt work Docs want to stop treatment and put on palliative care (no treatment just treat symptoms until end of life)......Long story but all of these treatments are to extend life a little longer....there are some that can go longer but very low percentages...unfortunately we have a tough hand over here...ADVICE (because I spent a lot of time crying and depressed) Enjoy every minute you have with him like even when hes not feeling well hug him and love him...it helps if he knows you love him even in sickness

RE: Just starting this journey and feeling lost

by meluvhubby on Tue Feb 02, 2016 04:15 AM

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If you are a spiritual person pray it definitely works and can help you stay focused on todays tasks of caregiving and not fear of anticipation...that could get overwhelming

RE: Just starting this journey and feeling lost

by rmp1399 on Tue Feb 02, 2016 12:34 PM

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I also agree with the occupational and physical therapy. Ask your doctor about it. It will definitely help. Just a side note on the radiation....for my mom, it was one of the roughest times. It made her so fatigued and she slept almost all day. I was scared it was the tumor growing and she wasn't going to make it. It is very hard on them and actually for a few weeks after it is over as well as the radiation is still doing its job in there . No one told us about this part, so I just like to pass it along. She made herself get up to walk a little everyday and eventually strength came back. Here she is three years later. It was hard for all of us to accept this as the new normal, but it is and you just have to Stay positive and love everyday!

RE: Just starting this journey and feeling lost

by johndean on Tue Feb 02, 2016 03:39 PM

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You have to be strong and have patience, I also have a friend who was in the same situation and then she chose another doctor through Placidway as she felt she didn't get the best treatment there. The thing is she got a lot of motivation and good treatment abroad

RE: Just starting this journey and feeling lost

by Frita on Tue Feb 02, 2016 06:11 PM

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On Feb 01, 2016 5:17 PM WendyC wrote:

My Boyfriend was diagnosed with a GBM IV the beginning of December. He had surgery and they could only remove about 40% of the tumor. The tumor is located on the left side and has affected his speech and right side. We finally began radiation and Chemo January 26th. He seems to be holding right now. Before treatment started I was watching him deteriorate before my eyes. When we left the hospital he passed his PT test, now he wouldn't pass, dragging his right leg and barely able to hold anything. Can someone tell me what exercises he can do to help his right side? We will start the Optune after his 6 weeks of radiation and I am hoping that we will get infront of this tumor. If anyone has advice, I welcome it... I am tired of constantly being in shock and I want to figure out how to handle this, own it and live the way we want to not the way this tumor is making us live. 

(This is my first post but have been reading here since September.)

Easier said than done but, hang in there, and although it may feel like you are alone, you are not. Many of us are going through the same yet different rollercoaster.

My ex-BF was diagnosed with AA after biopsy in September '15. Due to location and risk, surgery was not an option so the standard 6 week treatment of Temodar and Radiation was given. On follow-up, at another hospital & seeking the care of a neuro-oncologist, we have found that the tumor was not only unresponsive but, rapidly progressing. He opted to try one more round of Temodar at a double dose which was sheer hell for him and he vowed never to do it again. Old pathology was retested and confirmed to be GBM from the start. Two weeks later he had an emergency resection (partial - further confirmation of an incredibly aggressive GBM) and will now be the 1st patient at Columbia University Medical Center to enter a clinical trial currently open to 20 people nationwide. The team of doctors is hopeful this buys some more quality time as he is young (37yo) and quite healthy aside from this. Tomorrow we see the clinical team for diagnostics for final qualifications for the trial. In the meantime, the docs are awaiting other testing to line up additional second line options.

All that said, how each moment for your BF and for you is a guessing game. My best advice is to live in the moment and don't look at much of anything past the here and now. It has become the only way for me to find solace and peace while caring for the patient 24/7 and while maintaining a full-time job.

You are not alone...stay in touch with us and only the people in your life that are supportive and understanding.

Take care of yourself, even if it is just 5 minutes a day, cut out a moment or two for you. It is imperative to make it through this.

RE: Just starting this journey and feeling lost

by WendyC on Tue Feb 02, 2016 09:16 PM

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Thank you so much... I told him to hold his arm tight to his side and I told him why... He is a good guy and listens well. We bought a cane and he seems to take great pride in walking with it. We seem to be on the same plan you are on drugs wise. We are on point when it comes to affection... I spend very little time without him and I make sure to always say "we". I am sending you my love and prayers and crazy happy well wishes... Its sad to have sisters in this but I don't think we could make it without them. prayers and love to you and your hubby. 

RE: Just starting this journey and feeling lost

by WendyC on Tue Feb 02, 2016 09:23 PM

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We are and we do... We truely believe God has his hand in this deeper than we know... Three months before he was diagnosed, I landed my dream job and I work from home now. This way I am allowed to be with him all the time. Years ago I worked on the oncology floor at the Cleveland Clinic and learned first hand how to help ppl going through chemo and radiation. We have always eaten clean, whole foods and our diet has changed to a ketogenic diet and we sailed into that without too many dreams of chocolate water falls. God has set us up for this and even when I feel like I can't go any farther there is always something that happens that tells me we are not alone. Like finding this site and getting responses... it means the world! Thank you... mad prayers and love to you! 

RE: Just starting this journey and feeling lost

by WendyC on Tue Feb 02, 2016 09:24 PM

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Thank you! We do! Prayers and love to you!

RE: Just starting this journey and feeling lost

by WendyC on Tue Feb 02, 2016 09:30 PM

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Thank you... I see that youre a rock star like the rest of us! Thank you for responding... mad love and prayers to you and your ex BF. We will make it!! I hope tomorrow is nothing but good doctor meetings and you both leave there with new hope in your hearts. 

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