› Forums › General Melanoma Community › Stage IV Adrenal Gland, Lymph Node, Spleen..then, Vaginal..now, brain
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tsuki.
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- July 15, 2013 at 7:07 pm
Hello everyone,
This is my first post but I have been reading this bulletin board almost daily. All of your stories and words of encourgaement have been getting me through this toughest time in my life, so thank you.
Hello everyone,
This is my first post but I have been reading this bulletin board almost daily. All of your stories and words of encourgaement have been getting me through this toughest time in my life, so thank you.
My mom has stage IV melanoma. She was diagnosed in April 2013. The doctors told us that she had tumors in her lymph nodes, adrenal gland and spleen. It took a long time for them to get results back that would show whether or not she had the mutated BRAF gene (turns out that she didn't), so there was a long gap between her being diagnosed to her starting any kind of treatment. While she was waiting, she started spotting. She's 60 years old so it was unusual. She went to her gyno and was told that she also had vaginal cancer (melanoma that spread). Her gyno said that it was very possible to have missed this in a CT scan. Doesn't this seem odd that world renowned Dr.'s and hospitals would miss this??
So, we received this news and still hopeful, she started her yervoy infusions. She has not had many side effects to the Yervoy except fatigue. She seemed well until recently. About 3 weeks ago, she started acting "off" (calling people the wrong names and just more confused-highly unlike her). Turns out, she had a small brain tumor that would be easy to remove. The surgeon took it out and claimed that he got the whole thing. Next, it was time to decide between Gamma Knife and Cyber Knife. Her consultation was about 2 weeks after her surgery. She went in for the consultation and they did an MRI to find that there is another tumor that is twice the size of the 1st one.
I'm trying to stay positive but my family feels certain that this is a sign that things are on the decline and that her cancer is highly aggresive. She has started whole brain radiation last Thursday (5 days per week for 3 weeks) and had another on Friday. Friday night and all day Saturday, she was in tremendous pain. She was holding her side, vomiting and complaining of sharp pain in her ab and back. I fear that this a result of her adrenal gland tumor. On Sunday, the pain subsided a bit and today she's status quo. When the pain increases and you feel it a lot more than usual, does this typically mean that the tumor has grown???
The Dr. is telling us that there's no point in doing a CT scan until 3 weeks after her last Yervoy treatment but I fear that she's dying before me. Not knowing is the hardest part for us. If anyone has endured a similar experience and is willing to share, I would greatly appreciate it.
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- July 15, 2013 at 7:47 pm
I'm sorry that your mother is having such a difficult time. Hopefully, the WBR will start to have an effect within the next few treatments and your mother's neurological symptoms will improve. I suppose her abdominal pain could be caused by a tumor, but couldn't it also be a side-effect of ipi? If so, a temporary course of steroids might help a lot. That's something you could discuss with your oncologist.
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- July 15, 2013 at 7:47 pm
I'm sorry that your mother is having such a difficult time. Hopefully, the WBR will start to have an effect within the next few treatments and your mother's neurological symptoms will improve. I suppose her abdominal pain could be caused by a tumor, but couldn't it also be a side-effect of ipi? If so, a temporary course of steroids might help a lot. That's something you could discuss with your oncologist.
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- July 15, 2013 at 7:47 pm
I'm sorry that your mother is having such a difficult time. Hopefully, the WBR will start to have an effect within the next few treatments and your mother's neurological symptoms will improve. I suppose her abdominal pain could be caused by a tumor, but couldn't it also be a side-effect of ipi? If so, a temporary course of steroids might help a lot. That's something you could discuss with your oncologist.
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- July 15, 2013 at 8:58 pm
I'm so sorry to hear your story. Melanoma is such a difficult disease. You said that she was diagnosed in April but there was a delay in starting treatment. When did she start her Yervoy? How many doses has she recieved?
It's really impossible to tell without scans if tumors have grown/if there are new ones, but one of possible aspects that goes along with Yervoy is that sometimes there is a massive inflamatory reaction when the body attacks the tumors. This can make the tumors "appear" to grow (sometimes more than twice their size) before they begin to shrink again after the attack. It is partly for this reason that they do not like to do scans for at least 3 weeks after the last treatment as scans cannot tell the difference between tumors that are growing and not responding to treatment vs those that are being attacked by the body and are undergoing this inflamatory response. I imagine that if your mother is experiencing this type of inflamatory reaction with her adrenal (or other internal) tumor(s) it could create the pain, etc you describe. In my head it would make sense that if it was the tumors growing/advancing disease the symptoms would continue or get worse, but symptoms may begin to subside if it is the reaction of the body attacking the tuomor. I may be wrong on this account.
It is important to note as well that Yervoy does cary the risk of a severe colitis which can be life threatening if untreated (POW's note regarding steroids). Her doctor needs to know ANY side effects she's having so that he can help decide the right course of action (steroids or no).
I am a stage 4 patient as well who finished whole brain radiation 2 weeks ago and am half way through a course of Yervoy. I have at least 7 brain tumors and a great many other tumors, though most of them are under the skin, not in internal organs (I do have a few in my lungs and one in my spine). I have noticed some of my tumors under my skin get inflamed (the skin gets red, the area gest sore) and they seem to enlarge. This lasts for 2-5 days, then the inflamation goes away and they begin to shrink down. None of my tumors are gone yet (I can still feel them) but with all of the ones I have noticed this with they are smaller than when I first noticed them. Hopefully this is what is happening with your mother- the tumors are being attacked and are swelling and inflamed before they begin to die off.
In either case her doctor needs to know the symptoms she is having so that he can decide what, if any treatment she needs, even if it is just for pain relief and nausea.
I wish you the best of luck
-Eva
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- July 15, 2013 at 8:58 pm
I'm so sorry to hear your story. Melanoma is such a difficult disease. You said that she was diagnosed in April but there was a delay in starting treatment. When did she start her Yervoy? How many doses has she recieved?
It's really impossible to tell without scans if tumors have grown/if there are new ones, but one of possible aspects that goes along with Yervoy is that sometimes there is a massive inflamatory reaction when the body attacks the tumors. This can make the tumors "appear" to grow (sometimes more than twice their size) before they begin to shrink again after the attack. It is partly for this reason that they do not like to do scans for at least 3 weeks after the last treatment as scans cannot tell the difference between tumors that are growing and not responding to treatment vs those that are being attacked by the body and are undergoing this inflamatory response. I imagine that if your mother is experiencing this type of inflamatory reaction with her adrenal (or other internal) tumor(s) it could create the pain, etc you describe. In my head it would make sense that if it was the tumors growing/advancing disease the symptoms would continue or get worse, but symptoms may begin to subside if it is the reaction of the body attacking the tuomor. I may be wrong on this account.
It is important to note as well that Yervoy does cary the risk of a severe colitis which can be life threatening if untreated (POW's note regarding steroids). Her doctor needs to know ANY side effects she's having so that he can help decide the right course of action (steroids or no).
I am a stage 4 patient as well who finished whole brain radiation 2 weeks ago and am half way through a course of Yervoy. I have at least 7 brain tumors and a great many other tumors, though most of them are under the skin, not in internal organs (I do have a few in my lungs and one in my spine). I have noticed some of my tumors under my skin get inflamed (the skin gets red, the area gest sore) and they seem to enlarge. This lasts for 2-5 days, then the inflamation goes away and they begin to shrink down. None of my tumors are gone yet (I can still feel them) but with all of the ones I have noticed this with they are smaller than when I first noticed them. Hopefully this is what is happening with your mother- the tumors are being attacked and are swelling and inflamed before they begin to die off.
In either case her doctor needs to know the symptoms she is having so that he can decide what, if any treatment she needs, even if it is just for pain relief and nausea.
I wish you the best of luck
-Eva
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- July 15, 2013 at 8:58 pm
I'm so sorry to hear your story. Melanoma is such a difficult disease. You said that she was diagnosed in April but there was a delay in starting treatment. When did she start her Yervoy? How many doses has she recieved?
It's really impossible to tell without scans if tumors have grown/if there are new ones, but one of possible aspects that goes along with Yervoy is that sometimes there is a massive inflamatory reaction when the body attacks the tumors. This can make the tumors "appear" to grow (sometimes more than twice their size) before they begin to shrink again after the attack. It is partly for this reason that they do not like to do scans for at least 3 weeks after the last treatment as scans cannot tell the difference between tumors that are growing and not responding to treatment vs those that are being attacked by the body and are undergoing this inflamatory response. I imagine that if your mother is experiencing this type of inflamatory reaction with her adrenal (or other internal) tumor(s) it could create the pain, etc you describe. In my head it would make sense that if it was the tumors growing/advancing disease the symptoms would continue or get worse, but symptoms may begin to subside if it is the reaction of the body attacking the tuomor. I may be wrong on this account.
It is important to note as well that Yervoy does cary the risk of a severe colitis which can be life threatening if untreated (POW's note regarding steroids). Her doctor needs to know ANY side effects she's having so that he can help decide the right course of action (steroids or no).
I am a stage 4 patient as well who finished whole brain radiation 2 weeks ago and am half way through a course of Yervoy. I have at least 7 brain tumors and a great many other tumors, though most of them are under the skin, not in internal organs (I do have a few in my lungs and one in my spine). I have noticed some of my tumors under my skin get inflamed (the skin gets red, the area gest sore) and they seem to enlarge. This lasts for 2-5 days, then the inflamation goes away and they begin to shrink down. None of my tumors are gone yet (I can still feel them) but with all of the ones I have noticed this with they are smaller than when I first noticed them. Hopefully this is what is happening with your mother- the tumors are being attacked and are swelling and inflamed before they begin to die off.
In either case her doctor needs to know the symptoms she is having so that he can decide what, if any treatment she needs, even if it is just for pain relief and nausea.
I wish you the best of luck
-Eva
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- July 15, 2013 at 10:03 pm
Hello,
After going through WBR and SRS I can tell you that it's normal for the tumors in your brain to swell a bit before retracting or dying off. It's like you've injured the tumor. WBR for me was the nausea and fatigue was the worst. It's normal for her to feel horrible and it sounds like they are staying on top of things with her. Trust me I felt like it was the end for me as well, that was back in January and I"m still here. If the WBR doesn't work, she can have SRS or Gamma knife. I will be going through Gamma knife on July 25th, I have some good days and some bad with my brain mets. Have they given her any pain meds? They will help. It's best to rest if you feel you need it, I felt like I slept for a month straight.
Hang in there it sounds like she is doing the right treatments for her diagnosis. Unfortunately it's like the medication side effects make you feel horrible and you can't tell if it's cancer or medication causing the discomfort.
All my best to you and your Mom,
Denise
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- July 15, 2013 at 10:03 pm
Hello,
After going through WBR and SRS I can tell you that it's normal for the tumors in your brain to swell a bit before retracting or dying off. It's like you've injured the tumor. WBR for me was the nausea and fatigue was the worst. It's normal for her to feel horrible and it sounds like they are staying on top of things with her. Trust me I felt like it was the end for me as well, that was back in January and I"m still here. If the WBR doesn't work, she can have SRS or Gamma knife. I will be going through Gamma knife on July 25th, I have some good days and some bad with my brain mets. Have they given her any pain meds? They will help. It's best to rest if you feel you need it, I felt like I slept for a month straight.
Hang in there it sounds like she is doing the right treatments for her diagnosis. Unfortunately it's like the medication side effects make you feel horrible and you can't tell if it's cancer or medication causing the discomfort.
All my best to you and your Mom,
Denise
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- July 15, 2013 at 10:03 pm
Hello,
After going through WBR and SRS I can tell you that it's normal for the tumors in your brain to swell a bit before retracting or dying off. It's like you've injured the tumor. WBR for me was the nausea and fatigue was the worst. It's normal for her to feel horrible and it sounds like they are staying on top of things with her. Trust me I felt like it was the end for me as well, that was back in January and I"m still here. If the WBR doesn't work, she can have SRS or Gamma knife. I will be going through Gamma knife on July 25th, I have some good days and some bad with my brain mets. Have they given her any pain meds? They will help. It's best to rest if you feel you need it, I felt like I slept for a month straight.
Hang in there it sounds like she is doing the right treatments for her diagnosis. Unfortunately it's like the medication side effects make you feel horrible and you can't tell if it's cancer or medication causing the discomfort.
All my best to you and your Mom,
Denise
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- July 15, 2013 at 11:34 pm
Eva,
Thank you so much for your response.
Her last yervoy is next Friday and, as of today, the Dr. Agreed that if she continues to have extreme pain, they will do a CT scan before all of the recommended weeks have past to see if they can help her. I’ve read the WBR combined with yervoy can positively effect all rumors in your body, not just the brain. I truly hope that this will be the case for her and for you.
You’re right-yervoy does have the tendency to cause things to flare up before they get better so that’s a good hypothesis. I like it.
It sounds like you’re making progress in your treatment and I will pray that you continue to improve.
Pd1 sounds like the next best thing so we are trying to stabilize her brain tumors and get that going.
Wishing you all of the best.-
- June 1, 2019 at 8:54 am
Hi, I just read your story and am so struck by all the pain. I just stumbled upon your story and wondered how it is going at this point. If you mother is not alive anymore, I wish she had a painless death surrounded by her loved ones. Much love from this side of the world.
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- October 12, 2013 at 10:04 am
This is your first post… but it is really nice… I like your thought… I really appreciate your work….
Keep it up….. I really like read more from your side….
Ref: heavy duty racks
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- October 12, 2013 at 10:04 am
This is your first post… but it is really nice… I like your thought… I really appreciate your work….
Keep it up….. I really like read more from your side….
Ref: heavy duty racks
_______________
<a href="http://www.steelrange.com/heavy-duty-racks.html" rel="dofollow"><strong>heavy duty racks</strong></a>
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- October 12, 2013 at 10:04 am
This is your first post… but it is really nice… I like your thought… I really appreciate your work….
Keep it up….. I really like read more from your side….
Ref: heavy duty racks
_______________
<a href="http://www.steelrange.com/heavy-duty-racks.html" rel="dofollow"><strong>heavy duty racks</strong></a>
-
- July 15, 2013 at 11:34 pm
Eva,
Thank you so much for your response.
Her last yervoy is next Friday and, as of today, the Dr. Agreed that if she continues to have extreme pain, they will do a CT scan before all of the recommended weeks have past to see if they can help her. I’ve read the WBR combined with yervoy can positively effect all rumors in your body, not just the brain. I truly hope that this will be the case for her and for you.
You’re right-yervoy does have the tendency to cause things to flare up before they get better so that’s a good hypothesis. I like it.
It sounds like you’re making progress in your treatment and I will pray that you continue to improve.
Pd1 sounds like the next best thing so we are trying to stabilize her brain tumors and get that going.
Wishing you all of the best. -
- July 15, 2013 at 11:34 pm
Eva,
Thank you so much for your response.
Her last yervoy is next Friday and, as of today, the Dr. Agreed that if she continues to have extreme pain, they will do a CT scan before all of the recommended weeks have past to see if they can help her. I’ve read the WBR combined with yervoy can positively effect all rumors in your body, not just the brain. I truly hope that this will be the case for her and for you.
You’re right-yervoy does have the tendency to cause things to flare up before they get better so that’s a good hypothesis. I like it.
It sounds like you’re making progress in your treatment and I will pray that you continue to improve.
Pd1 sounds like the next best thing so we are trying to stabilize her brain tumors and get that going.
Wishing you all of the best.
-
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