› Forums › General Melanoma Community › Stage 4 advice needed please
- This topic has 24 replies, 6 voices, and was last updated 7 years, 5 months ago by
Kristi A..
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- November 14, 2016 at 6:18 pm
Hello Everybody. My name is Kristi. I am 30 years old, married and have a beautiful 10 year old daughter. I've been following this forum since March. I have learned so much from all of you here and I really appreciate it. I will try my hardest to explain all of this the best I can.
On March 22,2016 I ws diagnosed with stage 4 malignant melanoma. I am being seen at Mayo Clinic in Rochester, MN. Here is the rundown of everything that has happened since then.
1. March 22 – diagnosed with metastatic disease involving the left axilla, subcutaneous tissues, lungs, and bone. Initiated immunotherapy with ipi/nivo.
2. April 14- went to ER with pains below right lung. Tumor had swelled up from first ipi-nivo treatment. Given pain medication and sent home after 2 days. Also told they found a lesion on my kidney.
3. May 12- admitted to hospital for profound fatigue, severe headaches, nausea / vomiting, and fevers. Underwent a lumbar puncture after no infection was found and they found swelling of the brain, Aseptic Meningitis. Also, underwent surgery to have gallbladder removed after 3 stones were found. I was put on steroids and my fevers and headaches went away. This was a 9 day hospital stay.
4. May 27- reinitiated ipi-nivo but developed fevers and diarrhea, requiring steroid use.
5. June 22- decision was made to omit fourth dose of Ipi-Nivo and continue with just Nivo.
6. July 8-developed immune related colitis. Stopped Nivo after one cycle and initiated steroids. Diarrhea gradually resolved and slowly tapered off steroids.
7. September 7-PET scan showed complete response. No tumors lit up at all. I was over the moon when I heard these results.
8. September 9-reinitiated Nivo. Total: 3 doses of ipi-nivo, 2nd dose of just Nivo.
9. October 7- PET scan showed progression. Left axilla(SUV 3.5) and tumor in left lung(SUV 2.8) lit up again. Oncologist was unsure if the progression was caused by a break in treatment for two months or if cancer is just not responding any more. Decision was made to rescan in 6 weeks. If more progression is found, we will either restart ipilimumab or start braf/mek combo. Was told they don't really want me to restart ipi because of the side effects I had on it before.
10. November 4-mentioned to oncologist that left axilla seemed to be getting a little larger and noticed a couple of swollen lymph nodes in left side of neck. Oncologist decided to start Braf/Mek right away due to likely progression and keep me on Nivo in the meantime. Just waiting for my insurance company to approve the medication.
I guess what I'm hoping is that I can get some advice on whether or not I'm going about this all the right way. I'm not going to lie. I'm a mess and I've been trying so hard to deal with all of this but I'm beyond lost right now. I have no idea if I should really be starting Braf/Mek so soon without a lot to go off of. I have had 3 doses of ipi-nivo and this Friday will be my 7th just Nivo treatment. The lymph nodes are still a little swollen and left axilla doesn't seem to be getting bigger or smaller, just staying the same. I've been debating whether I should email my doctor to see if we should do another scan before starting Braf/Mek, or just wait for the meds and do that. I just don't understand how it came back so quickly after getting a complete response from the ipi-nivo.
If anyone can help me understand this and let me know if I'm doing the right thing when it comes to the next step to take, I would greatly appreciate it. I know all of you here are very knowledgeable about melanoma and I feel like your the ones I should be turning to right now. Sorry for the really long post.
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- November 14, 2016 at 9:18 pm
Hi Kristi,
I've said it before, and I'll say it again. Mel refuses to play by any rules. Responses, reactions, timing, all appear to differ somewhat in each person. Your original speedy response to ipi/nivo is not unheard of, just as your side-effects, and later progression happens to varying degrees. It sounds like you are actually getting good care, with experienced oncologist who is quick to take action, so that should make you feel a bit better right now. Piling on the drug treatments is a newer trend that has been having excellent results so at this point I would continue to trust your doctors. Unnecessary scans should be avoided, and insurance companies will likely push-back on scans more than quarterly. A big part of our battle is in our minds. The stress and anxiety is completely understandable, yet serves no good purpose. You have already been through a lot, live life, and trust that you can beat this.
Gary
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- November 14, 2016 at 9:18 pm
Hi Kristi,
I've said it before, and I'll say it again. Mel refuses to play by any rules. Responses, reactions, timing, all appear to differ somewhat in each person. Your original speedy response to ipi/nivo is not unheard of, just as your side-effects, and later progression happens to varying degrees. It sounds like you are actually getting good care, with experienced oncologist who is quick to take action, so that should make you feel a bit better right now. Piling on the drug treatments is a newer trend that has been having excellent results so at this point I would continue to trust your doctors. Unnecessary scans should be avoided, and insurance companies will likely push-back on scans more than quarterly. A big part of our battle is in our minds. The stress and anxiety is completely understandable, yet serves no good purpose. You have already been through a lot, live life, and trust that you can beat this.
Gary
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- November 14, 2016 at 9:31 pm
Gary, thank you so much for your response. I completely agree that the biggest battle is in our minds and I hope that in time this will get a little easier for me emotionally. I will do my best to stay positive for myself and for my family. It puts my mind at ease to hear that you think the doctors are taking the right approach. It's all just so overwhelming sometimes. Once again, thank you.
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- November 14, 2016 at 9:31 pm
Gary, thank you so much for your response. I completely agree that the biggest battle is in our minds and I hope that in time this will get a little easier for me emotionally. I will do my best to stay positive for myself and for my family. It puts my mind at ease to hear that you think the doctors are taking the right approach. It's all just so overwhelming sometimes. Once again, thank you.
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- November 14, 2016 at 9:31 pm
Gary, thank you so much for your response. I completely agree that the biggest battle is in our minds and I hope that in time this will get a little easier for me emotionally. I will do my best to stay positive for myself and for my family. It puts my mind at ease to hear that you think the doctors are taking the right approach. It's all just so overwhelming sometimes. Once again, thank you.
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- November 14, 2016 at 9:18 pm
Hi Kristi,
I've said it before, and I'll say it again. Mel refuses to play by any rules. Responses, reactions, timing, all appear to differ somewhat in each person. Your original speedy response to ipi/nivo is not unheard of, just as your side-effects, and later progression happens to varying degrees. It sounds like you are actually getting good care, with experienced oncologist who is quick to take action, so that should make you feel a bit better right now. Piling on the drug treatments is a newer trend that has been having excellent results so at this point I would continue to trust your doctors. Unnecessary scans should be avoided, and insurance companies will likely push-back on scans more than quarterly. A big part of our battle is in our minds. The stress and anxiety is completely understandable, yet serves no good purpose. You have already been through a lot, live life, and trust that you can beat this.
Gary
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- November 14, 2016 at 9:38 pm
Hi kristi
i can't believe you have been through all of this in just 6 months!!
You are doing so well and it sounds like your doctors are reacting quickly to changes and keeping plans a b and c ready. That's what I would be doing. Have the next plan ready as changes seem to happen very quickly both for good and bad in your case
it wound be really interesting to know what part of the ipi/nivo caused your complete response. The course of ipi alone is only 4 infusions so maybe it has done its work anyway. Seems like staying on nivo might be good if the adverse reactions can be controlled.
your case is really different to mine so it's so hard to advise, but I just wanted you to know we are interested and listening even if we can't give immediate advice or offer any suggestions
keep fighting. Lucky you are young and strong!
anne-Louise
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- November 15, 2016 at 12:40 am
Thank you for your response anne-Louise. I was really hoping Nivo alone would work since I responded so well from the combo but like Gary said before melanoma does not play by the rules and everyone responds differently. Hopefully the BRAF/MEK will get this under control and give me time to try something else before it gets out of hand. Thank you so much for listening and I really appreciate the feedback.
Kristi A.
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- November 15, 2016 at 12:40 am
Thank you for your response anne-Louise. I was really hoping Nivo alone would work since I responded so well from the combo but like Gary said before melanoma does not play by the rules and everyone responds differently. Hopefully the BRAF/MEK will get this under control and give me time to try something else before it gets out of hand. Thank you so much for listening and I really appreciate the feedback.
Kristi A.
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- November 15, 2016 at 12:40 am
Thank you for your response anne-Louise. I was really hoping Nivo alone would work since I responded so well from the combo but like Gary said before melanoma does not play by the rules and everyone responds differently. Hopefully the BRAF/MEK will get this under control and give me time to try something else before it gets out of hand. Thank you so much for listening and I really appreciate the feedback.
Kristi A.
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- November 14, 2016 at 9:38 pm
Hi kristi
i can't believe you have been through all of this in just 6 months!!
You are doing so well and it sounds like your doctors are reacting quickly to changes and keeping plans a b and c ready. That's what I would be doing. Have the next plan ready as changes seem to happen very quickly both for good and bad in your case
it wound be really interesting to know what part of the ipi/nivo caused your complete response. The course of ipi alone is only 4 infusions so maybe it has done its work anyway. Seems like staying on nivo might be good if the adverse reactions can be controlled.
your case is really different to mine so it's so hard to advise, but I just wanted you to know we are interested and listening even if we can't give immediate advice or offer any suggestions
keep fighting. Lucky you are young and strong!
anne-Louise
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- November 14, 2016 at 9:38 pm
Hi kristi
i can't believe you have been through all of this in just 6 months!!
You are doing so well and it sounds like your doctors are reacting quickly to changes and keeping plans a b and c ready. That's what I would be doing. Have the next plan ready as changes seem to happen very quickly both for good and bad in your case
it wound be really interesting to know what part of the ipi/nivo caused your complete response. The course of ipi alone is only 4 infusions so maybe it has done its work anyway. Seems like staying on nivo might be good if the adverse reactions can be controlled.
your case is really different to mine so it's so hard to advise, but I just wanted you to know we are interested and listening even if we can't give immediate advice or offer any suggestions
keep fighting. Lucky you are young and strong!
anne-Louise
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- November 16, 2016 at 3:53 am
I wouldn't delay anything, melanoma is vicious. So sorry you are having to fight this.
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- November 17, 2016 at 9:55 am
Kristi,
First and foremost, loosng it, is all part of this process and you have been to hell ad back You are not only dealing with ths BEAST, you have a child and a family. Taking care of a family is difficult enough and then you add Melanoma to it… Take a deep breath and please please pease take care of KRISTI,,,, I am a stage Iv NED almost 16 years after multiple mets to both uungs and a brain met.
One fo the greatest gifts I gave myself was taking care of me. Take all the help you can get from everyone right now. Let them help with your daughter, cooking , cleaning etc. Whatever needs to be done, if people offer , take their help
For me one the greatest gifts I gave myself was to DESTRESS.
HOW?
MEDITATION
AROMATHERAPY BATHS
MASSAGE
PRAYER
VISUALISATION TAPES.
Kristi this BEAST has changed your life completely and has sent you into a whirlwind. Please please please take care of YOU right now. It's timeto be selfisch. I sat my family down and told them it was time to take care of me now. My daughters were 15 and 17. Its bad enough to deal with every day stress ad then add Melanoma to it can bring you over the edge Please take care of Kristi. Big Hugs
Love and Light
Carole K.
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- November 17, 2016 at 9:55 am
Kristi,
First and foremost, loosng it, is all part of this process and you have been to hell ad back You are not only dealing with ths BEAST, you have a child and a family. Taking care of a family is difficult enough and then you add Melanoma to it… Take a deep breath and please please pease take care of KRISTI,,,, I am a stage Iv NED almost 16 years after multiple mets to both uungs and a brain met.
One fo the greatest gifts I gave myself was taking care of me. Take all the help you can get from everyone right now. Let them help with your daughter, cooking , cleaning etc. Whatever needs to be done, if people offer , take their help
For me one the greatest gifts I gave myself was to DESTRESS.
HOW?
MEDITATION
AROMATHERAPY BATHS
MASSAGE
PRAYER
VISUALISATION TAPES.
Kristi this BEAST has changed your life completely and has sent you into a whirlwind. Please please please take care of YOU right now. It's timeto be selfisch. I sat my family down and told them it was time to take care of me now. My daughters were 15 and 17. Its bad enough to deal with every day stress ad then add Melanoma to it can bring you over the edge Please take care of Kristi. Big Hugs
Love and Light
Carole K.
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- November 17, 2016 at 9:55 am
Kristi,
First and foremost, loosng it, is all part of this process and you have been to hell ad back You are not only dealing with ths BEAST, you have a child and a family. Taking care of a family is difficult enough and then you add Melanoma to it… Take a deep breath and please please pease take care of KRISTI,,,, I am a stage Iv NED almost 16 years after multiple mets to both uungs and a brain met.
One fo the greatest gifts I gave myself was taking care of me. Take all the help you can get from everyone right now. Let them help with your daughter, cooking , cleaning etc. Whatever needs to be done, if people offer , take their help
For me one the greatest gifts I gave myself was to DESTRESS.
HOW?
MEDITATION
AROMATHERAPY BATHS
MASSAGE
PRAYER
VISUALISATION TAPES.
Kristi this BEAST has changed your life completely and has sent you into a whirlwind. Please please please take care of YOU right now. It's timeto be selfisch. I sat my family down and told them it was time to take care of me now. My daughters were 15 and 17. Its bad enough to deal with every day stress ad then add Melanoma to it can bring you over the edge Please take care of Kristi. Big Hugs
Love and Light
Carole K.
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- November 17, 2016 at 1:52 pm
Hi Krista,
So very sorry for what you have had to deal with in such a short period of time! Your docs have done well it seems, and put you on the best combo, and dealt with your side effects as efficiently as possible with state of the art recommendations. In fact, the plan you stated is state of the art, too, and getting some good responses. I just posted these articles and recommendations regarding combining BRAFi with immunotherapy:
Hope that helps. Hang in there. My kids were 10 and 12 when I was diagnosed. I can imagine the pain you feel for your daughter. But there is hope for you and her. It was not always easy but I'm still here and my kids are living on their own now with lives, and jobs, and loves of their own. I wish you well. Celeste
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- November 17, 2016 at 1:52 pm
Hi Krista,
So very sorry for what you have had to deal with in such a short period of time! Your docs have done well it seems, and put you on the best combo, and dealt with your side effects as efficiently as possible with state of the art recommendations. In fact, the plan you stated is state of the art, too, and getting some good responses. I just posted these articles and recommendations regarding combining BRAFi with immunotherapy:
Hope that helps. Hang in there. My kids were 10 and 12 when I was diagnosed. I can imagine the pain you feel for your daughter. But there is hope for you and her. It was not always easy but I'm still here and my kids are living on their own now with lives, and jobs, and loves of their own. I wish you well. Celeste
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- November 17, 2016 at 1:52 pm
Hi Krista,
So very sorry for what you have had to deal with in such a short period of time! Your docs have done well it seems, and put you on the best combo, and dealt with your side effects as efficiently as possible with state of the art recommendations. In fact, the plan you stated is state of the art, too, and getting some good responses. I just posted these articles and recommendations regarding combining BRAFi with immunotherapy:
Hope that helps. Hang in there. My kids were 10 and 12 when I was diagnosed. I can imagine the pain you feel for your daughter. But there is hope for you and her. It was not always easy but I'm still here and my kids are living on their own now with lives, and jobs, and loves of their own. I wish you well. Celeste
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- November 18, 2016 at 4:26 pm
Thank you all for your replies. I met with my primary yesterday to discuss how I have been doing on Zoloft and my Trazodone. He decided to up the dosage of Zoloft and I'm so glad he did. Today I am feeling better(except for the joint pain in my knees) and looking forward to getting my 6th Nivo treatment today, even if I feel like its not doing much.
Carole, I never thought to sit my family down and talk with them about needing help but it's definitely something I should do. Thanks for the tip:) I try my best to keep my mind busy and have even tried a relaxation CD. It helps a little bit. I am glad I got it as times can be tough and we could all use a little help sometimes.
Celeste, I've read over your blog a lot, especially the timeline of all your Nivo treatments. I was really hoping for the same response as you but we all respond differently and that's okay. I'm sure something will work eventually. I am curious to see what my response and side effects will be from both Nivo and BRAF/MEK. Hopefully it's not too bad!
I am so thankful for the wonderful husband and daughter I have, and everyday is a blessing with them. I will take everyone's advice and live, laugh and love as much as possible. Thank you all for your uplifting responses. I have tears in my eyes because it feels so so good to talk to people who have gone and are currently going through the same thing. I will keep you all posted on how it is going with both treatments. Still waiting for my insurance company to approve it, but there was a problem with the oncology office sending off the paperwork. So, I guess I just need to breathe and be patient. And by the way…you are all amazing people. Thank you so much.
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- November 18, 2016 at 4:26 pm
Thank you all for your replies. I met with my primary yesterday to discuss how I have been doing on Zoloft and my Trazodone. He decided to up the dosage of Zoloft and I'm so glad he did. Today I am feeling better(except for the joint pain in my knees) and looking forward to getting my 6th Nivo treatment today, even if I feel like its not doing much.
Carole, I never thought to sit my family down and talk with them about needing help but it's definitely something I should do. Thanks for the tip:) I try my best to keep my mind busy and have even tried a relaxation CD. It helps a little bit. I am glad I got it as times can be tough and we could all use a little help sometimes.
Celeste, I've read over your blog a lot, especially the timeline of all your Nivo treatments. I was really hoping for the same response as you but we all respond differently and that's okay. I'm sure something will work eventually. I am curious to see what my response and side effects will be from both Nivo and BRAF/MEK. Hopefully it's not too bad!
I am so thankful for the wonderful husband and daughter I have, and everyday is a blessing with them. I will take everyone's advice and live, laugh and love as much as possible. Thank you all for your uplifting responses. I have tears in my eyes because it feels so so good to talk to people who have gone and are currently going through the same thing. I will keep you all posted on how it is going with both treatments. Still waiting for my insurance company to approve it, but there was a problem with the oncology office sending off the paperwork. So, I guess I just need to breathe and be patient. And by the way…you are all amazing people. Thank you so much.
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- November 18, 2016 at 4:26 pm
Thank you all for your replies. I met with my primary yesterday to discuss how I have been doing on Zoloft and my Trazodone. He decided to up the dosage of Zoloft and I'm so glad he did. Today I am feeling better(except for the joint pain in my knees) and looking forward to getting my 6th Nivo treatment today, even if I feel like its not doing much.
Carole, I never thought to sit my family down and talk with them about needing help but it's definitely something I should do. Thanks for the tip:) I try my best to keep my mind busy and have even tried a relaxation CD. It helps a little bit. I am glad I got it as times can be tough and we could all use a little help sometimes.
Celeste, I've read over your blog a lot, especially the timeline of all your Nivo treatments. I was really hoping for the same response as you but we all respond differently and that's okay. I'm sure something will work eventually. I am curious to see what my response and side effects will be from both Nivo and BRAF/MEK. Hopefully it's not too bad!
I am so thankful for the wonderful husband and daughter I have, and everyday is a blessing with them. I will take everyone's advice and live, laugh and love as much as possible. Thank you all for your uplifting responses. I have tears in my eyes because it feels so so good to talk to people who have gone and are currently going through the same thing. I will keep you all posted on how it is going with both treatments. Still waiting for my insurance company to approve it, but there was a problem with the oncology office sending off the paperwork. So, I guess I just need to breathe and be patient. And by the way…you are all amazing people. Thank you so much.
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Tagged: cutaneous melanoma
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