› Forums › General Melanoma Community › More bad news
- This topic has 14 replies, 9 voices, and was last updated 6 years ago by
GeoTony.
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- April 5, 2018 at 7:11 pm
I was just here last week despairing over my boyfriend's fast-growing lung nodules … Things have gotten a lot worse since then. He had a PET scan two days ago and his GP called yesterday to ask if he'd seen it yet, since it's not good (so we haven't actually talked to an oncologist yet – that's on Monday – hoping against hope she'll tell us "Oh, you're still good, nothing to be too concerned about here.").
Now on top of the brain and lung mets we already knew about, the PET scan lit up lesions in his kidneys, spleen, adrenal gland, spine, some other bones, lymph nodes in his neck, and even his mouth (although we're hoping the mouth one might just be due to an intense gingivitis flare-up he's been dealing with lately – he didn't brush his teeth for 2+ weeks while he was in the hospital after his craniotomy). Apart from the lung metastases, all the other spots are <1cm. Small blessings at this point I guess.
The scariest thing is that when he had a full-body CT scan in mid-February when he was first hospitalized for the brain metastases, there was no sign of cancer anywhere beyond his lungs and brain. It appears to have spread extensively in just 2 months.
The cancer agency called him yesterday to schedule a CT scan for this afternoon. We think it's to confirm what the PET scan says.
I hate this disease and I hate that he's going through this. We are both so sad. He's in pain – his back hurts, his lungs hurt, his head hurts, his mouth hurts. He hasn't even gotten to start immunotherapy yet since he's been recovering from the craniotomy. Immunotherapy still scheduled to start tomorrow but I wonder if that plan will change in light of the much greater tumour burden now.
Feeling hopeless. I've never heard of anything like this before. I wish I could make it better for him.
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- April 5, 2018 at 9:42 pm
I am so sorry to hear about your boyfriend's quick progression. I am not an expert by far…hopefully, others will post, too. However, my melanoma spread all over my body (lungs, liver, spleen, bones, brain,etc.) several years ago. They put me on Tafinlar and Mekenist because I was BRAF positive. I was in a good deal of pain with the bone mets. My tumors melted away after a few weeks; it was a miracle. I've been on it ever since (3 years) on an "every other day dose."
Please make sure your boyfriend gets tested for the BRAF gene. You will be in my prayers!
Blessings,
Tricia
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- April 5, 2018 at 10:37 pm
Thanks Tricia – that gives me a little hope. I think our oncologist still wants to keep him on immunotherapy if she can. Despite the cancer literally all over his body (I actually forgot to list liver mets in my original post, too… yup also in the liver), he's still able to walk, take care of himself, etc. He's obviously not going to the gym or anything but regular Tylenol 3s + some other medication are keeping the pain under control so far. He is still often tired from the brain surgery and gets winded a little more easily.
He's only 35 so I think the oncologist thinks he can handle it, and at least last time we talked to her, she really wanted to go for the most durable response we can get. I'm not sure if all the new tumours will change her mind. I think she originally wanted to save BRAF inhibitors as a last resort.
Thanks again for your kindness. I have a lot of respect and admiration and even affection for all the people on this forum, even the ones I've never talked to.
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- April 6, 2018 at 2:47 pm
I am sorry for what you and your boy friend are going through. I hope with all my heart that he gets started on ipi/nivo (if I understand correctly, that was the plan?) because he needs systemic treatment for his melanoma ASAP!!!! Whatever it is!!! His doc is right that immunotherpy treatments can have more durable responses. However, at times the rapid response that can be attained with targeted therapy like the BRAF/MEK combo's can substantially relieve cancer burden (and pain and misery) – and then before the response is diminished the patient can be switched to immunotherapy. But, either way…melanoma treatment is what your dear one needs with no further delay!!
I hope you boyfriend gets a good start on that today. Hang in there. You are right, melanoma sucks great big green, hairy, wizard balls. Ask questions as you need. Yours, celeste
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- April 7, 2018 at 1:50 am
Thanks so much. He got his first ipi/nivo infusion today as well as a prescription for hydromorphone and some other stuff (sleeping aid, anti-nausea, anti-anxiety). I'm still nervous because the decline has been so dramatic – last weekend we took a nice half-hour walk with one of our dogs in the forest and around the house he was able to help take the dog out, make breakfast and dinner, help with dishes, etc. It felt halfway normal for about 4 days.
Things are so different now. Yesterday and today he could barely walk the four blocks to the cancer center and apart from that, he sleeps all day. It's scary. It reminds me of the early days after his craniotomy. I hope the ipi/nivo will work some magic for him. The oncologist also mentioned that more stereotactic radiosurgery could possibly give him relief regarding the lung and bone mets that are causing the most pain – but again, she wants to hold off on that if we can because she doesn't want him on any steroids if possible. I'm grateful our oncologist is still treating this aggressively and as if she thinks there's a chance we can save him.
We also got more bad news from the MRI this week – while the 2 small brain mets that got SRS have shrunk, one new little brain met has popped up. Again the plan is to hold off on SRS, so that no steroids will be necessary, to give the immunotherapy a chance to work.
Thanks again for your encouragement and kindness and advice – it means a lot. I don't feel like I can talk to anybody about this stuff here. My boyfriend doesn't want to know, and I don't want to worry him more than he already is, and everyone else just doesn't understand what it's like. None of our friends have gone through something like this before. I also often feel like I have to keep a strong and optimistic front for everybody else – admittedly I'm not very good at this because I cry a lot… – but at least I never talk about my deepest fear, that he'll experience a prolonged and very painful death, with anyone I know in real life.
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- April 7, 2018 at 4:02 am
Hello cjm22, my name is Mike, ive been on MRF for a short while, since end of last year when my own battle with Melanoma {since 2008} took a turn onto the wrong damn street { tumors in both Lungs biggest is 2.4CM}So ya, i feel ya on that one, its gotten "Real" now, i mean, it always has been but, Lungs? YIXE! Im hopin" yer husband pulls through with his new meds! atleast shrink the Tumors that are given him pain! yer hubby is taking some good stuff so, lets get a good report back here in a few months, stay strong!…Mike
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- April 7, 2018 at 4:15 am
thank you <3 I also hope we have more good news to share soon … the hydromorphone at least is taking the edge off the pain. I'm so sorry for everybody who has to go through this and my heart just aches for everyone else here. But your positive attitude has cheered me up a bit!!!
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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 10, 2018 at 5:21 am
Thanks for telling me about Jered's story. How's he doing?
My boyfriend is pretty doped up on new pain medication to handle the pain from the bone mets in his spine. He sleeps most of the day. He's also experiencing night sweats now … a little icky 🙂 He had his first ipi/nivo combo infusion on Friday. So far no sign of side-effects. Of course that just gives me more reasons to worry because now I wonder, what if that means the immunotherapy isn't working?!
He is BRAF+ so I guess targeted therapies are in the back pocket still, as is targeted radiation to relieve his breathing difficulties and back pain. Oncologist really wants to give immunotherapy a shot first. It hurts me to see him in so much pain and discomfort, though – I just want to yell at everybody to 'FIX IT! FIX IT RIGHT NOW!' But I guess some pain and discomfort and night sweats is worth the potential for a durable response (although right now I'd take any response at all…..)
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- April 10, 2018 at 6:50 am
It is still possible to get a second opinion/consult from another melanoma specialist. (Your boyfriend's doctor is a melanoma specialit, right?) Your BF can also request to start Taf/Mek and reopen that discussion with his oncologist. Quality of life is an important issue.
Sending prayers for him, for you, and for his doctor that together you come to the best possible decisions.
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- April 10, 2018 at 3:43 pm
Hi CJM22,
So sorry for what you and your BF are going through – mel is definitely a demon!! But I too want to tell you both that there's many reasons to believe he can get through this!! I post on behalf of my sister, so the backgrounder on my profile is her story – please read it!! She was in a very similar condition 2 years ago – tremendously high tumour burden, mets everywhere (spine, lungs, liver, spleen, pancreas, other bones and then only a few months later, hundreds of brain mets). She's NED today – all through immmunotherapy and radiation – no surgery. There is always much to be hopeful for but sometimes it's hard to see. I wish you both the very best possible outcomes and I will continue to send good thoughts your way!!! Take care! Best,
Barb
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- April 10, 2018 at 7:12 pm
That's such great news about your sister. Thanks for sharing that story. I want this SO BAD for my boyfriend. I hope he can get there too. It's so hard to see someone you love go from their funny, confident, capable self to a pained, angry husk in the span of a couple months.
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- April 10, 2018 at 5:33 pm
So sorry to hear about your boyfriend's condition. I hope the immunotherapy starts to kick butt. FYI, my husband has been on Braf/Tafinlar concurrently with immunotherapy so you may want to add it to the mix as it may rapidly reduce the tumor burden. Take care.
Ann
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