Forum Replies Created
- Replies
-
-
- July 8, 2015 at 1:36 am
I'm actually a psychiatrist, though I am here strictly as a family member. I will weigh in to say that if you feel your husband is depressed that this is worth bringing up to your doctor. There are a lot of reasons he could be feeling down – the stress of his diagnosis/treatment, the disease/treatment (inflammatory states actually predispose you to depression – so your body's reaction to the cancer, immunotherapy, etc), other hormonal imbalances. Depression is more than just being sad, so can definitely interfere with one's ability to celebrate the victories of treatment and can also decrease motivation, enjoyment of things big and small, change sleep, appetite, concentration, value of life – potentially many many things!
It is not uncommon when dealing with everything that comes with cancer, but it's definitely treatable! Oncology clinics frequently have social workers, and even psychiatrists, available – so call in and let a nurse know, tell your doc at the next appointment, or all of the above!
-
- July 8, 2015 at 1:36 am
I'm actually a psychiatrist, though I am here strictly as a family member. I will weigh in to say that if you feel your husband is depressed that this is worth bringing up to your doctor. There are a lot of reasons he could be feeling down – the stress of his diagnosis/treatment, the disease/treatment (inflammatory states actually predispose you to depression – so your body's reaction to the cancer, immunotherapy, etc), other hormonal imbalances. Depression is more than just being sad, so can definitely interfere with one's ability to celebrate the victories of treatment and can also decrease motivation, enjoyment of things big and small, change sleep, appetite, concentration, value of life – potentially many many things!
It is not uncommon when dealing with everything that comes with cancer, but it's definitely treatable! Oncology clinics frequently have social workers, and even psychiatrists, available – so call in and let a nurse know, tell your doc at the next appointment, or all of the above!
-
- July 8, 2015 at 1:36 am
I'm actually a psychiatrist, though I am here strictly as a family member. I will weigh in to say that if you feel your husband is depressed that this is worth bringing up to your doctor. There are a lot of reasons he could be feeling down – the stress of his diagnosis/treatment, the disease/treatment (inflammatory states actually predispose you to depression – so your body's reaction to the cancer, immunotherapy, etc), other hormonal imbalances. Depression is more than just being sad, so can definitely interfere with one's ability to celebrate the victories of treatment and can also decrease motivation, enjoyment of things big and small, change sleep, appetite, concentration, value of life – potentially many many things!
It is not uncommon when dealing with everything that comes with cancer, but it's definitely treatable! Oncology clinics frequently have social workers, and even psychiatrists, available – so call in and let a nurse know, tell your doc at the next appointment, or all of the above!
-
- July 8, 2015 at 1:27 am
I agree with your oncologist – if you're BRAF negative (or wild type), I think the combination ipi/nivo is probably one of the best treatments out there right now! It actually has some of the best response rates that you'll see from systemic therapy for melanoma. It is possible that toxicity (autoimmune side effects – diarrhea, itching most commonly, but potentially severe) could be a problem, however. It is also POSSIBLY (still being studied) important to try ipilimumab + the PD1 inhibitor together from the start instead of one after another or a combo AFTER trying something else, so for this reason as well, I think ipi/nivo is a good way to start. As a doc myself, I've reviewed a lot of the literature and I felt strongly about making sure my dad has access to this. He is actually flying to a different state for this treatment, which the melanoma specialist agreed may be worth it.
TIL is really cool – I think the studies are still more preliminary. One thing to keep in mind also is whether the treatment you're choosing excludes you from future possible treatments/clinical trials. So you could try one if you want and jump to the other if it's not working.
You're way too young for this (though everyone pretty much is in the end) – I'm sorry and I wish you the best!
-
- July 8, 2015 at 1:27 am
I agree with your oncologist – if you're BRAF negative (or wild type), I think the combination ipi/nivo is probably one of the best treatments out there right now! It actually has some of the best response rates that you'll see from systemic therapy for melanoma. It is possible that toxicity (autoimmune side effects – diarrhea, itching most commonly, but potentially severe) could be a problem, however. It is also POSSIBLY (still being studied) important to try ipilimumab + the PD1 inhibitor together from the start instead of one after another or a combo AFTER trying something else, so for this reason as well, I think ipi/nivo is a good way to start. As a doc myself, I've reviewed a lot of the literature and I felt strongly about making sure my dad has access to this. He is actually flying to a different state for this treatment, which the melanoma specialist agreed may be worth it.
TIL is really cool – I think the studies are still more preliminary. One thing to keep in mind also is whether the treatment you're choosing excludes you from future possible treatments/clinical trials. So you could try one if you want and jump to the other if it's not working.
You're way too young for this (though everyone pretty much is in the end) – I'm sorry and I wish you the best!
-
- July 8, 2015 at 1:27 am
I agree with your oncologist – if you're BRAF negative (or wild type), I think the combination ipi/nivo is probably one of the best treatments out there right now! It actually has some of the best response rates that you'll see from systemic therapy for melanoma. It is possible that toxicity (autoimmune side effects – diarrhea, itching most commonly, but potentially severe) could be a problem, however. It is also POSSIBLY (still being studied) important to try ipilimumab + the PD1 inhibitor together from the start instead of one after another or a combo AFTER trying something else, so for this reason as well, I think ipi/nivo is a good way to start. As a doc myself, I've reviewed a lot of the literature and I felt strongly about making sure my dad has access to this. He is actually flying to a different state for this treatment, which the melanoma specialist agreed may be worth it.
TIL is really cool – I think the studies are still more preliminary. One thing to keep in mind also is whether the treatment you're choosing excludes you from future possible treatments/clinical trials. So you could try one if you want and jump to the other if it's not working.
You're way too young for this (though everyone pretty much is in the end) – I'm sorry and I wish you the best!
-
- June 29, 2015 at 6:35 pm
Hopefully you'll get replies from people who have gone through this themselves, but I can speak on behalf of my dad. Last year he had bilateral lung mets removed via thoroscopy, so just three small incisions on each side instead of opening up the whole chest. He had a parts of the lobes in each lung removed. He has smoked most of his life, but had good respiratory status and now one year later has absolutely no residual problems with breathing, even with exertion. He (at 63) was only in the hospital for about 4-5 days. He had an epidural for pain, which was good, but we found that toradol (an IV/IM NSAID like ibuprofen or naproxen) on top of it really helped with the tight band-like pain afterwards. He has not had any lung recurrence. He did not do any systemic therapy, however, so he now has recurrence elsewhere and is looking at medications like keytruda.
That's his experience in brief – if you have any other questions or thoughts, let me know! I'm glad to hear you're responding well to the keytruda! It seems like removing the final tumor may be a good idea!
Lauren
-
- June 29, 2015 at 6:35 pm
Hopefully you'll get replies from people who have gone through this themselves, but I can speak on behalf of my dad. Last year he had bilateral lung mets removed via thoroscopy, so just three small incisions on each side instead of opening up the whole chest. He had a parts of the lobes in each lung removed. He has smoked most of his life, but had good respiratory status and now one year later has absolutely no residual problems with breathing, even with exertion. He (at 63) was only in the hospital for about 4-5 days. He had an epidural for pain, which was good, but we found that toradol (an IV/IM NSAID like ibuprofen or naproxen) on top of it really helped with the tight band-like pain afterwards. He has not had any lung recurrence. He did not do any systemic therapy, however, so he now has recurrence elsewhere and is looking at medications like keytruda.
That's his experience in brief – if you have any other questions or thoughts, let me know! I'm glad to hear you're responding well to the keytruda! It seems like removing the final tumor may be a good idea!
Lauren
-
- June 29, 2015 at 6:35 pm
Hopefully you'll get replies from people who have gone through this themselves, but I can speak on behalf of my dad. Last year he had bilateral lung mets removed via thoroscopy, so just three small incisions on each side instead of opening up the whole chest. He had a parts of the lobes in each lung removed. He has smoked most of his life, but had good respiratory status and now one year later has absolutely no residual problems with breathing, even with exertion. He (at 63) was only in the hospital for about 4-5 days. He had an epidural for pain, which was good, but we found that toradol (an IV/IM NSAID like ibuprofen or naproxen) on top of it really helped with the tight band-like pain afterwards. He has not had any lung recurrence. He did not do any systemic therapy, however, so he now has recurrence elsewhere and is looking at medications like keytruda.
That's his experience in brief – if you have any other questions or thoughts, let me know! I'm glad to hear you're responding well to the keytruda! It seems like removing the final tumor may be a good idea!
Lauren
-
- August 22, 2015 at 3:28 pm
The combination is available through expanded access until it's officially FDA-approved (meaning the FDA is allowing people to get the treatment out of compassion since it's effective and their approval process takes forever!). My dad just started and required insurance approval for the ipi, but since the 'combination' is on trial, the nivolumab is being provided at no-cost to him by the study and will be for the duration of the treatment.
-
- August 22, 2015 at 3:28 pm
The combination is available through expanded access until it's officially FDA-approved (meaning the FDA is allowing people to get the treatment out of compassion since it's effective and their approval process takes forever!). My dad just started and required insurance approval for the ipi, but since the 'combination' is on trial, the nivolumab is being provided at no-cost to him by the study and will be for the duration of the treatment.
-
- August 22, 2015 at 3:28 pm
The combination is available through expanded access until it's officially FDA-approved (meaning the FDA is allowing people to get the treatment out of compassion since it's effective and their approval process takes forever!). My dad just started and required insurance approval for the ipi, but since the 'combination' is on trial, the nivolumab is being provided at no-cost to him by the study and will be for the duration of the treatment.
-
- June 29, 2015 at 6:39 pm
He hasn't started the combo treatment yet. He did tolerate the stereotactic radiosurgery for his brain met beautifully! He lives in Nebraska, however I'm working in Ann Arbor, MI, so they will be coming here for treatment.
If you need any help interpreting the inclusion or exclusion criteria, let me know! I say just get in contact with the doc as quickly as possible to get an appointment asap so you can get the information you need. I hope you both do well, too!
-
- June 29, 2015 at 6:39 pm
He hasn't started the combo treatment yet. He did tolerate the stereotactic radiosurgery for his brain met beautifully! He lives in Nebraska, however I'm working in Ann Arbor, MI, so they will be coming here for treatment.
If you need any help interpreting the inclusion or exclusion criteria, let me know! I say just get in contact with the doc as quickly as possible to get an appointment asap so you can get the information you need. I hope you both do well, too!
-
- June 29, 2015 at 6:39 pm
He hasn't started the combo treatment yet. He did tolerate the stereotactic radiosurgery for his brain met beautifully! He lives in Nebraska, however I'm working in Ann Arbor, MI, so they will be coming here for treatment.
If you need any help interpreting the inclusion or exclusion criteria, let me know! I say just get in contact with the doc as quickly as possible to get an appointment asap so you can get the information you need. I hope you both do well, too!
-