@sandyd77
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- June 13, 2021 at 9:35 pm
Hello All,I have not posted since my husband completed his whole brain radiation treatments for brain mets in early March. He weathered the treatments well but he started a significant decline a few weeks after treatment completion with extreme fatigue and loss of appetite. We followed up with a biopsy of the liver lesion which had turned up when the brain mets did. The thought was the lesion was a melanoma met. Unfortunately, it proved to be a totally separate cancer called Cholangiocarcinoma. This cancer occurs in the bile duct and is fairly uncommon.
His doctors considered microwave ablation and possible chemo but by then his condition has deteriorated significantly and his CA 19-9 count was well over 600 (upper acceptable limit is around 37), indicating significant metastasis. He was placed on home hospice on May 27th and he passed away at home surrounded by me and our sons on June 8th. He would have been 69 years old on June 22nd. He had weathered adenocarcinoma of the right lung (detected and removed in 2018), Stage 4 melanoma (detected in early 2018 and treated through May 0f 2021), and the last straw which was the bile duct cancer.
He was on TAF/MEK for 14 months with very good results and minimal side effects until the bottom fell out in late January of this year. We were able to have well over 3.5 years due to wonderful doctors and nurses and treatments available for melanoma but did not count on the other cancers. This forum helped me and him tremendously.
You all are very brave and strong individuals and I wish you all good scans, happy days, and improved health. God Bless.
Sandy D.
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- March 30, 2021 at 9:44 pm
Hello,My husband is Stage 4 and has been on Braf/Mek for a year. He was switched to targeted after 10 months of Opdivo provided only a mixed response and mets in his lungs and the original site on his back started to increase and grow. He had a complete response on Braf/Mek except for a small met on his liver which has just started to increase. However, during a recent scan, we found he had mets in his brain although the lungs/back remain OK. He just completed 10 rounds of brain radiation and is recovering from that fatigue. Although the Braf/Mek made him tired, it did not make him as fatigued as the brain radiation has – I understand this is to be expected and we are hoping it will pass. He is scheduled for a biopsy of the liver met next week to have some additional testing done for possible alternative therapies.
While on the Braf/Mek – he had some occasional fevers/chills which we managed with Tylenols. Other than than that, he had a persistent rash/itching on this torso and we have become heavy Cortisone cream users! He did not have any hair loss or digestive issues. I am very glad he had the option of the Braf/Mek as overall – we found it to be effective and manageable.
I wish you the best of luck!
Sandy D
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- March 12, 2021 at 10:21 pm
Hello all,Just wanted to provide an update on my husband’s brain mets. He has completed the prescribed 10 whole brain radiation treatments with minimal side effects. He has also successfully tapered off dexamethasone. His hair is just starting to come out and other than a tender scalp, he is doing OK. We have blood work including LDH level scheduled for next week and then we go back to his medical oncologist to determine next steps. We are apprehensive but hopeful.
Thanks again to all for sharing your experiences. It has made a world of difference in how I was able to support him through this phase of his journey. Best wishes to all for continued health improvements.
Sandy D.
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- November 1, 2020 at 1:51 am
Hello Snoe,My husband has Stage IV Melanoma and moved to Taflinar and Mekinist in March of 2020 after 10 months on Opdivo (Nivo) with a limited response (he also had multiple surgeries in 2018). He also experienced fevers with shaking chills for about 5 months with months 1, 2 and 3 being the worst. We did not reduce dosage but did treat with Tylenol every 4 hours when the fevers were at their worst. The fevers ran from 100 to 101.4. He now occasionally hits 99.8/100 around the time of month he starts on a new round of medication (moving into month 9) but the shaking chills have abated and so have the higher fevers. He does have a good bit of itching with rash but is seems to be manageable for him. Before starting on Taf/Mek he had subcutaneous mets on his back, as well as in both lungs and in his liver. For the most part all nodules have shrunk to the point of insignificance so the response has been great. I would suggest you stick with the meds as long as you can manage and hopefully you also will have your side effects reduce over time. Best of luck to you!
Sandy D.
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- July 10, 2020 at 12:49 am
Hello Misty,My husband has been on Mektovi / Braftovi targeted therapy since March, 25th of this year. Prior to that – he was having monthly Opdivo infusions for 10 months. He was diagnosed with Stage 3 Melanoma in February of 2018 and had a wide excsion on his back, with a positive sentinel node. He had 12 additional lymph nodes removed via axillary dissection and all nodes were negative. All was good until May of 2019 when a PET Scan showed melanoma recurrence in his back near the original site, as well as in his lungs with a small lesion on his liver moving him to Stage 4. He then started on Opdivo which slowed things down a bit, but stopped working for him. He tested as BRAF positive and his oncologist put him on the oral chemo combination of Mek/Braf in March. Primary side effects have been fever, fatigue and rash. His fevers for the first month or so were preceded by shaking chills. Over time, we found that if he took Tylenol as soon as the shaking started, the impact was less and fever was lower. The shaking shills have stopped for the most part after t20 months and he goes for days/weeks with no temp over 99.5 and we are managing the rash with OTC creams. His energy level has picked up a bit (we are almost 4 months in) and the results of his most recent scan were dramatic – all occurrences of melanoma have reduced in size significantly, with some almost gone. He is continuing on the medication and will have his next scan in September. I hope you have a good experience with the meds and that can manage the effects and get great results. Best of luck to you!
Sandy D
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- February 22, 2021 at 1:07 pm
Ann,Thanks so much for the information you shared about your husband’s treatments. It helps SO MUCH much to hear about others who have traveled this path. He is remaining positive about this and we are staying hopeful. First of 10 treatments is tomorrow. I hope your husband is doing well and you are as well!
Best,
Sandy
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- February 15, 2021 at 8:45 pm
Thanks so much for your response – our appointment is tomorrow. We have now seen the MRI report and there are multiple mets so your situation does sound similar. It is good to hear from someone going through it. I hope all goes well for you and also for us!Sandy D
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- February 12, 2021 at 3:28 pm
Celeste – thank you so much for all of the information you have provided. It is so very helpful and I have shared it with my husband. I have learned along the way on this journey being informed is the best ally. We feel a bit more hopeful after reading your response and the information, although we do realize everyone’s case is different.Our oncologist is one of the document Melanoma treatment specialists in our state so we feel like we are in good hands. We also live in Maryland has which as many medical resources.
You truly are a wealth of knowledge and a treasure. Will keep you posted on our next steps.
Best,
Sandy D.
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- June 18, 2020 at 12:37 am
He was on immunotherapy for 8 Months. He stopped in February and started the targeted therapy in March s0 there was not a long period between ending immunotherapy and starting targeted. The immunotherapy did provide some response initially but there was an extended period of time where nothing was happening, then everything started increased in size. Good Luck!Sandy D
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