@llchelseall
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- February 13, 2019 at 1:00 am
Gah, so good Shannon! Thanks so much for your share and for being so honest. Targeted therapies saved my brother's life and we did not administer Mekinist the recommended way at all. In fact, we had to threaten arson (kidding, maybe) to give him his initial dose when he was on life support with a feeding tube because it is labeled as not to be crushed, dissolved, etc. They told us to call Hospice 4 times before that point and yet only 5 days after that first dose was dissolved in water and pushed through his gtube, he bounced back. The crazy part about it was my bro's oncologist got the pills from a drug rep and they were expired…I still feel like I'm full of it when I tell this story.
Keep up the good work being a badass advocate, you are amazing!
Chelsea
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- April 9, 2018 at 4:25 am
You are doing everything right for your boyfriend by researching and reaching out. My brother Jered was diagnosed stage iv in late January after he thought he had bronchitis all December. Like your boyfriend, my brother was 35 at the time – he spent his 36th birthday in the hospital on March 15th – and had/has mets throughout his body, in every place your boyfriend has, plus some and minus the brain. I heard over and over again from his oncologist and specialists that they have never seen someone with such a large tumor burden. It took me weeks to swallow that reality; to not feel like my soul, heart, and brain were going to escape out of my ass as I processed my strong, successful, powerful brothers new normal.
Like Tricia said, I am not an expert or medical professional. Also like Tricia, I think it is imperative that your boyfriend is tested for the BRAF gene mutation and if he is positive, really consider the targeted therapies, especially if there are complications that arise from immunotherapy.
3 days after my brothers first round of Opdivo/Yervoy, and 9 rounds of radiation to a tumor on his superior vena cava, his body went into complete shock and meltdown. He was dying; there is no way around it, I know it, I finally can say it. He was on life support with his kidneys, liver, and gut failing. Even with every other specialist urging us to call hospice, because of Jered being BRAF+, his oncologists dissolved Zelboraf and pushed it through his gtube. 4 days later all of his labs improved and just over 2 weeks later he was out of ICU.
Jered's oncologist thinks/hopes what my brother experienced was Tumor Lysis Syndrome. His next scan is on the 25th and we will see if the 1 round of immunotherapy, 9 rounds of radiation, and the targeted therapy have reduced his tumor burden. We do know that the targeted therapies have reduced his physical and mental burden enough to process all that has happened in the last 2 months.
Keep doing what you are doing and stay vigilant. His struggle is so real and him having you near is so important. I am so sorry you have to go through this. Don't ever let anyone tell you it's over until all available treatments have been exhausted. If we had not pushed so hard for my brother to receive Zelboraf he would not be chillin' upstairs tonight at our parent's house recovering from a kick butt day of physical therapy.
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- April 3, 2018 at 2:08 am
Hi Ashley,
My family and I just went through the same situation with my brother Jered who is stage iv. While my brother was bouncing back from being close to death in the ICU for 20 days, his patient advocate started asking us to visit nearby LTACHs so he could be transferred. We did, and we were unable to find a facility that would administer chemo medications, which his Zelboraf/Mekinist targeted therapies are considered.
We felt desperate and scared as to what we could do for him much like you are feeling about your father. My insight after all of this is that hospitals do not like dealing with stage iv melanoma patients, they feel it's a hopeless situation. My brother's ICU nurses and most specialists didn't know about the amazing effects new drugs, especially the targeted therapies, have for melanoma sufferers.
After telling them about the LTACHs not willing to give him his chemo pills, they moved on to suggesting hospice. After discussing our frustrations and fears with Jered's oncologists, he promised us Jered would not be discharged from the hospital until he was ready to go to a rehabilitation facility or home. As the previous person replied, rehabilitation hospitals will give chemo drugs and are set up to deal with more complicated patients like your father.
Jered stayed in the hospital for a total 50 days, in that time I heard of patients being there for 4 months at a time when they couldn't go anywhere else. Fight for your father to remain where he is so his targeted therapy can do its thing. We had to deal with doctors and nurses asking us daily what we were going to do, trying to push us to take him elsewhere; had we taken him to an LTACH and not started and continued with his targeted therapies, I truly believe my brother would not be here. He stayed at the hospital until he learned to swallow his pills and was able to have his trach removed. He was then sent to a HealthSouth rehabilitation hospital.
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- April 3, 2018 at 12:05 am
UPDATE: The Zelboraf was simply dissolved in water and pushed through his gtube. Within 4 days Jered showed vast improvements. He was also given steroids at the same time they started the Zelboraf. He is still on the Zelboraf along with Mekinist and is now at a rehabilitation hospital to rebuild the muscle loss he experienced from being in the ICU for 36 days. I truly believe Zelboraf saved his life.
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- April 3, 2018 at 4:38 am
Thanks a million again Rob, I can't tell you how much I appreciate your advocacy/voice for Adriana; it truly helps people like me keep my chin up.
I am hoping Jered's labs improve over the next weeks so he can qualify for a clinical trial like you listed, the pd1 plus braf would be our choice right now. His oncologist has never mentioned a trial and only mentioned MD Anderson for surgery if it ever becomes an option for him.
I truly value any and all advice, stories, or musings you have, email me with anything. [email protected]
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- February 21, 2018 at 2:22 am
Um. Is there some way to give an internet high five, like a really really "hell yeah" type of high five? Because that is what I want to give you!! I feel so lucky to have your input on this, I just read that blog post and will probably be up all night here in the ICU binging on the rest of your work. Congratulations on being an amazing human!
"The talks" started yesterday before we got the go ahead this afternoon for the BRAF inhibitor to be administered by dissolving it and passing through his gtube. Genentech sent his oncologist a response packet containing cases of folks crushing and dissolving the pills with effective outcomes. Yay! But really, why did we HAVE to have that? Anyway, "the talks" meaning end of life hints to his wife; the nurses looking at him and doing the shaking their heads bs because all of the specialists say the same thing, "it's in oncologies court now, they are in control and will do what is best." Meanwhile, the ringing in my ears is everyone I've met in oncology having said, "we have never seen anything like this before." F***.
So tomorrow morning I will start my next mission: get my sister in law to demand that he get his ipi/nivo no matter what and more quickly than she may be comfortable with. You have given me resources to explain myself with support. Thank you, thank you, thank you. Jered would agree with you wholeheartedly and his wife will recognize that. He would high five the snot outta you too!
Chelsea
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- February 20, 2018 at 2:27 pm
Hi Ann, thank you so much for your reply. That would be the best outcome for us right now; for Jered to take the Zelboraf and show enough improvement to take the second round of his Opdivo/Yervoy. I can't thank you enough for giving a little validation to our mission of getting those pills in him no matter what.
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- February 20, 2018 at 2:23 pm
Hey Rob, thanks so much for sharing your experience. We too are experiencing the desperation of Jered continuing his meds because it seems to be his only hope while he is in here. I just spoke to the director of the ICU and she is still saying that they need approval. She is vague as to who is responsible for this approval. Again, thank you for your response.
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- February 20, 2018 at 3:19 am
Hey Celeste, thanks so much for your response. My brother who is 35 years old had 2 skin spots removed that tested positive for melanoma 5 years ago. They removed a lymph node that was close to the spot on his neck and additional tissue around the spot on his back, both came back negative. Fast forward to this past December, he had a persistent cough that was first deemed bronchitis but after 2 more doctors visits they did a chest x ray (mid January) and sent him to the cancer center for spots in his lungs. After the full run through 5 weeks ago he was diagnosed stage 4 with a "massive amount" of mets throughout his body from superior vena cava to femur.
They immediately started radiation and 4 days after diagnosis he received his first treatment of Opdivo and Yervoy. 2 days after his immunotherapy he went in for radiation feeling like he was out of his mind and having severe anxiety. They immediately sent him to the ER where they tried to treat his tachycardia. He slipped further and further into the delirious state from what we understand was possibly due to high ammonia levels and they couldn't keep his heart rate down so he was transferred to the icu and put on a vent within 48 hours of being at the hospital. Today is day 15 in the icu, he now has a trach, is sedated on morphine, a fentanyl patch, and adivan.
He shows small signs of improvement everyday in terms of responding to medicines, for example they just gave him 2 medications to treat Tumor Lysis Syndrome and he responded very well and his kidneys have vastly improved in just 2 days. His bilirubin and sodium are high and his liver is close to being in a critical state. He was scheduled to have his 2nd round of Opdivo/Yervoy on Wednesday but his oncologists feels he is too fragile for it so they are trying to focus on him taking the Zelboraf but are really dragging their feet with giving him that too. I don't know if he is just stalling by saying he needs clear evidence that dissolving the Zelboraf and giving it to him through his stomach tube would work? His wife is going to try and convey that she and my mother are adamant they give it to him by Wednesday. You are spot on, what do we have to lose?
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