› Forums › General Melanoma Community › Tinnitus – on ipi/nivo
- This topic has 42 replies, 7 voices, and was last updated 9 years, 3 months ago by
sister of patient.
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- May 9, 2016 at 8:33 pm
Hi all – Just reporting in case it's of any benefit to anyone else.
My sister just had a 2nd infusion last Thursday. Woke up Friday with tinnitus and it's progressed today to where she couldn't even stand to listen to one of her favourite CDs (Adele – the undulations really made it go wacky!!) – said it was like her whole ear was starting to vibrate.
Read all I could find on here this aft about tinnitus and she is calling her onc. But of course it's all scary – maybe just really bad congestion in her sinuses, maybe pituitary gland affected and cortisol levels falling, maybe brain mets (she was clear before but that brain scan was 4 mos. ago).
Otherwise, tolerating 2nd infusion really well and starting to feel way better. After first infusion, she was ill for two weeks and then felt better but visit with onc prior to 2nd found she should've been on a drug that they took her off several months ago when she went on Taf/Mek (something for stomach acid – a common drug that ulcer patients take). As it's way better, we're hoping the stomach med was the "missing piece" of the puzzle.
Update, she called onc – nurse isn't concerned about the tinnitus at all BUT they are concerned because her vision has been steadily deteriorating for weeks. They knew that last week and now, all of a sudden, they seemed to be concerned??? Geez!!
I am making inquiries about how to get a 2nd opinion – we're here in ON, Canada though – not easy!!!
Best thoughts, always, for all on here!!!!
Barb
- Replies
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- May 9, 2016 at 10:34 pm
Hi Barb, where is your sister being treated? I have been going to the Ottawa General since 2012 and the level of professionalism has been excellent!!! best wishes!!!Ed
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- May 9, 2016 at 10:34 pm
Hi Barb, where is your sister being treated? I have been going to the Ottawa General since 2012 and the level of professionalism has been excellent!!! best wishes!!!Ed
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- May 9, 2016 at 10:34 pm
Hi Barb, where is your sister being treated? I have been going to the Ottawa General since 2012 and the level of professionalism has been excellent!!! best wishes!!!Ed
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- May 9, 2016 at 11:22 pm
Hi Ed,
I hope you're doing and feeling really well!!
She's going to Juravinski CC in Hamilton (lives in Ancaster). You told me before to check out Dr. Ohashi at Princess Maragaret and so I have made inquiries about how we'd get a referral there. I know Ohashi is more of a researcher than a treating onc but we'd still like to know we're exploring the best possible courses of action. TILs therapy in particular sounds like it has a lot of promise and they're leading it at PM in this country.
Why I say the referral thing is difficult is that alot of treatments that are frontline and fully approved south of the border are not "fully approved" here but done still as clinical trials. And, it's the protocols for those trials that worry us. E.g., when she was on Taf/Mek, she had a huge and immediate response but developed a grade 3 AE (rash) and the protocol was to discontinue treatment >> so disappointing rather than trying to find a way to beat the rash – they did try but not hard enough IMO.
So, now on trial of ipi/nivo and we have a few concerns, not the least of which is the nurse administering the program is "scatter-brained" (and that's putting it nicely – a bunch of errors made so far, including not having any ipi/nivo on hand last Thurs. when her 2nd infusion was scheduled. They sourced it out of London but she had to wait half the day for it to arrive and then they "pounded" it into her – because quitting time is at 4:30 – resulted in her whole arm turning black and blue with the bruising around the IV site. That's only 1 mistake, there've been at least a half dozen.)
We're not impressed that she was missing a drug, especially when she's required to bring all her meds for them to review at every appointment and I am really not impressed that suddenly they're concerned about her eyes when they were told before that her sight is deteriorating. She says she didn't mention it to them last week but they were certainly told before. And now today, dissing the tinnitus – I think the two have to be related, from all the reading I've done here today and elsewhere.
We're worried that if she outright asks her treating onc for a referral up to PM in TO they'll say fine but that "protocol" may be to take her off the program, as its her onc at Juravinski who's conducting it.
Last, her onc is not "just" a mel specialist – she has a dual specialty, mel and GI cancers. From everything I've read on here, everyone says to make sure your doc is a melanoma specialist, period!!
Always a million questions … never enough answers.
Best,
Barb
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- May 9, 2016 at 11:22 pm
Hi Ed,
I hope you're doing and feeling really well!!
She's going to Juravinski CC in Hamilton (lives in Ancaster). You told me before to check out Dr. Ohashi at Princess Maragaret and so I have made inquiries about how we'd get a referral there. I know Ohashi is more of a researcher than a treating onc but we'd still like to know we're exploring the best possible courses of action. TILs therapy in particular sounds like it has a lot of promise and they're leading it at PM in this country.
Why I say the referral thing is difficult is that alot of treatments that are frontline and fully approved south of the border are not "fully approved" here but done still as clinical trials. And, it's the protocols for those trials that worry us. E.g., when she was on Taf/Mek, she had a huge and immediate response but developed a grade 3 AE (rash) and the protocol was to discontinue treatment >> so disappointing rather than trying to find a way to beat the rash – they did try but not hard enough IMO.
So, now on trial of ipi/nivo and we have a few concerns, not the least of which is the nurse administering the program is "scatter-brained" (and that's putting it nicely – a bunch of errors made so far, including not having any ipi/nivo on hand last Thurs. when her 2nd infusion was scheduled. They sourced it out of London but she had to wait half the day for it to arrive and then they "pounded" it into her – because quitting time is at 4:30 – resulted in her whole arm turning black and blue with the bruising around the IV site. That's only 1 mistake, there've been at least a half dozen.)
We're not impressed that she was missing a drug, especially when she's required to bring all her meds for them to review at every appointment and I am really not impressed that suddenly they're concerned about her eyes when they were told before that her sight is deteriorating. She says she didn't mention it to them last week but they were certainly told before. And now today, dissing the tinnitus – I think the two have to be related, from all the reading I've done here today and elsewhere.
We're worried that if she outright asks her treating onc for a referral up to PM in TO they'll say fine but that "protocol" may be to take her off the program, as its her onc at Juravinski who's conducting it.
Last, her onc is not "just" a mel specialist – she has a dual specialty, mel and GI cancers. From everything I've read on here, everyone says to make sure your doc is a melanoma specialist, period!!
Always a million questions … never enough answers.
Best,
Barb
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- May 9, 2016 at 11:22 pm
Hi Ed,
I hope you're doing and feeling really well!!
She's going to Juravinski CC in Hamilton (lives in Ancaster). You told me before to check out Dr. Ohashi at Princess Maragaret and so I have made inquiries about how we'd get a referral there. I know Ohashi is more of a researcher than a treating onc but we'd still like to know we're exploring the best possible courses of action. TILs therapy in particular sounds like it has a lot of promise and they're leading it at PM in this country.
Why I say the referral thing is difficult is that alot of treatments that are frontline and fully approved south of the border are not "fully approved" here but done still as clinical trials. And, it's the protocols for those trials that worry us. E.g., when she was on Taf/Mek, she had a huge and immediate response but developed a grade 3 AE (rash) and the protocol was to discontinue treatment >> so disappointing rather than trying to find a way to beat the rash – they did try but not hard enough IMO.
So, now on trial of ipi/nivo and we have a few concerns, not the least of which is the nurse administering the program is "scatter-brained" (and that's putting it nicely – a bunch of errors made so far, including not having any ipi/nivo on hand last Thurs. when her 2nd infusion was scheduled. They sourced it out of London but she had to wait half the day for it to arrive and then they "pounded" it into her – because quitting time is at 4:30 – resulted in her whole arm turning black and blue with the bruising around the IV site. That's only 1 mistake, there've been at least a half dozen.)
We're not impressed that she was missing a drug, especially when she's required to bring all her meds for them to review at every appointment and I am really not impressed that suddenly they're concerned about her eyes when they were told before that her sight is deteriorating. She says she didn't mention it to them last week but they were certainly told before. And now today, dissing the tinnitus – I think the two have to be related, from all the reading I've done here today and elsewhere.
We're worried that if she outright asks her treating onc for a referral up to PM in TO they'll say fine but that "protocol" may be to take her off the program, as its her onc at Juravinski who's conducting it.
Last, her onc is not "just" a mel specialist – she has a dual specialty, mel and GI cancers. From everything I've read on here, everyone says to make sure your doc is a melanoma specialist, period!!
Always a million questions … never enough answers.
Best,
Barb
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- May 10, 2016 at 2:03 am
Hi Barb, I am being treated in Kitchener Ontario. The Dr. You want in TO would be David Hogg. He is the big name in melanoma around these parts (not mine but who I would be referred to should I qualify for a clinical trial). I wish your sister the best. Nancy -
- May 10, 2016 at 2:03 am
Hi Barb, I am being treated in Kitchener Ontario. The Dr. You want in TO would be David Hogg. He is the big name in melanoma around these parts (not mine but who I would be referred to should I qualify for a clinical trial). I wish your sister the best. Nancy -
- May 10, 2016 at 2:03 am
Hi Barb, I am being treated in Kitchener Ontario. The Dr. You want in TO would be David Hogg. He is the big name in melanoma around these parts (not mine but who I would be referred to should I qualify for a clinical trial). I wish your sister the best. Nancy -
- May 10, 2016 at 2:11 am
Wow, thank you so much Nancy. I'm going to make inquiries first thing in the morning!!
My best wishes to you as well!!
Barb
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- May 10, 2016 at 2:11 am
Wow, thank you so much Nancy. I'm going to make inquiries first thing in the morning!!
My best wishes to you as well!!
Barb
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- May 10, 2016 at 2:11 am
Wow, thank you so much Nancy. I'm going to make inquiries first thing in the morning!!
My best wishes to you as well!!
Barb
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- May 9, 2016 at 10:52 pm
Guessing there's probably multiple possibilties to explain hearing and vision changes — physical side effects, brain issue, etc. I hope it's something explainable that can be addressed quickly.
Sounds like where you and your sister are, you may have to be more of your own advocates.What is the normal MRI interval they are doing for your sister? If I was experiencing changes that might be neurological, I would be on the phone to my onc for sure, and would be expecting him to schedule a brain scan like an MRI, pretty quickly.
Or, what they can probably do even faster is a CT of the brain. They did that for me once in the ER 5 years ago, and were able to diagnose a brain met. Later they did an MRI for more precision. Maybe a good way to rule in/out a brain met as one possible cause?
– Kyle
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- May 9, 2016 at 10:52 pm
Guessing there's probably multiple possibilties to explain hearing and vision changes — physical side effects, brain issue, etc. I hope it's something explainable that can be addressed quickly.
Sounds like where you and your sister are, you may have to be more of your own advocates.What is the normal MRI interval they are doing for your sister? If I was experiencing changes that might be neurological, I would be on the phone to my onc for sure, and would be expecting him to schedule a brain scan like an MRI, pretty quickly.
Or, what they can probably do even faster is a CT of the brain. They did that for me once in the ER 5 years ago, and were able to diagnose a brain met. Later they did an MRI for more precision. Maybe a good way to rule in/out a brain met as one possible cause?
– Kyle
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- May 9, 2016 at 10:52 pm
Guessing there's probably multiple possibilties to explain hearing and vision changes — physical side effects, brain issue, etc. I hope it's something explainable that can be addressed quickly.
Sounds like where you and your sister are, you may have to be more of your own advocates.What is the normal MRI interval they are doing for your sister? If I was experiencing changes that might be neurological, I would be on the phone to my onc for sure, and would be expecting him to schedule a brain scan like an MRI, pretty quickly.
Or, what they can probably do even faster is a CT of the brain. They did that for me once in the ER 5 years ago, and were able to diagnose a brain met. Later they did an MRI for more precision. Maybe a good way to rule in/out a brain met as one possible cause?
– Kyle
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- May 9, 2016 at 11:40 pm
Hi Kyle,
Yeah, we're hoping that a brain scan or at least a CT of brain will be ordered tomorrow (but it could be weeks of waiting to actually have it done). And, she hadn't been given any further dates for followup scans re. the ipi/nivo treatment. We're actually looking forward to those because we both feel that she is responding.
You're absolutely right about being our own advocates – that's what I'm trying to be, for sure – I was with her for three months earlier this year but had to come home at the end of March and haven't been able to get back there. I do feel that I'd have a better "handle" on things if I was with her every day. She does have a husband but, quite honestly, he's pretty useless when it comes to this stuff (and I don't even feel bad saying that!!!! He definitely does not "have her back.")
Thanks Kyle – I'm going to reiterate the "advocacy" again!!
Wishing best thoughts for you on your journey!!!
Barb
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- May 9, 2016 at 11:40 pm
Hi Kyle,
Yeah, we're hoping that a brain scan or at least a CT of brain will be ordered tomorrow (but it could be weeks of waiting to actually have it done). And, she hadn't been given any further dates for followup scans re. the ipi/nivo treatment. We're actually looking forward to those because we both feel that she is responding.
You're absolutely right about being our own advocates – that's what I'm trying to be, for sure – I was with her for three months earlier this year but had to come home at the end of March and haven't been able to get back there. I do feel that I'd have a better "handle" on things if I was with her every day. She does have a husband but, quite honestly, he's pretty useless when it comes to this stuff (and I don't even feel bad saying that!!!! He definitely does not "have her back.")
Thanks Kyle – I'm going to reiterate the "advocacy" again!!
Wishing best thoughts for you on your journey!!!
Barb
-
- May 9, 2016 at 11:40 pm
Hi Kyle,
Yeah, we're hoping that a brain scan or at least a CT of brain will be ordered tomorrow (but it could be weeks of waiting to actually have it done). And, she hadn't been given any further dates for followup scans re. the ipi/nivo treatment. We're actually looking forward to those because we both feel that she is responding.
You're absolutely right about being our own advocates – that's what I'm trying to be, for sure – I was with her for three months earlier this year but had to come home at the end of March and haven't been able to get back there. I do feel that I'd have a better "handle" on things if I was with her every day. She does have a husband but, quite honestly, he's pretty useless when it comes to this stuff (and I don't even feel bad saying that!!!! He definitely does not "have her back.")
Thanks Kyle – I'm going to reiterate the "advocacy" again!!
Wishing best thoughts for you on your journey!!!
Barb
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- May 10, 2016 at 12:53 am
I have had really loud tinnitus after my 4th Ipi infusion. My onc had me see an ear nose and throat doctor who said I had a lot of fluid build up in my ears. He prescribed a steroid nasal spray that I have been using for about a month now and it has helped a lot. The tinnitus isn't all gone, but it is definitely not as loud as it was. Hope she gets some answers soon.
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- May 10, 2016 at 12:53 am
I have had really loud tinnitus after my 4th Ipi infusion. My onc had me see an ear nose and throat doctor who said I had a lot of fluid build up in my ears. He prescribed a steroid nasal spray that I have been using for about a month now and it has helped a lot. The tinnitus isn't all gone, but it is definitely not as loud as it was. Hope she gets some answers soon.
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- May 10, 2016 at 12:53 am
I have had really loud tinnitus after my 4th Ipi infusion. My onc had me see an ear nose and throat doctor who said I had a lot of fluid build up in my ears. He prescribed a steroid nasal spray that I have been using for about a month now and it has helped a lot. The tinnitus isn't all gone, but it is definitely not as loud as it was. Hope she gets some answers soon.
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- May 10, 2016 at 2:05 am
Thank you Jenn. Earlier today I read your thread from March where you described the "ringing" you were experiencing and so was hoping that my sister's could be a similar build-up of fluid. Glad to know that the nasal spray is helping you!!!
It was after reading about tinnitus in general on here that I called her and told her to call her onc and suggested to her that maybe a brain scan was in order. Of course, that freaked her a bit … but, she agreed, it's way better to know than not to know.
The eye thing is really bad though and she didn't mention how bad even to me but she's had what all the literature calls a "curtain" on her sight since Sat. (she thought it was hazy outside but it was clear as a bell) and yesterday she started getting the shooting light flashes going on in the corners. So, I know (from eye problems I have) the retinas are, at the least, being stressed.
Hopefully tomorrow will shed more light on all of this!!
Thanks Jenn for everything you post on here – I read it all and it always helps!!
Holding best thoughts for you too!!
Barb
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- May 10, 2016 at 2:05 am
Thank you Jenn. Earlier today I read your thread from March where you described the "ringing" you were experiencing and so was hoping that my sister's could be a similar build-up of fluid. Glad to know that the nasal spray is helping you!!!
It was after reading about tinnitus in general on here that I called her and told her to call her onc and suggested to her that maybe a brain scan was in order. Of course, that freaked her a bit … but, she agreed, it's way better to know than not to know.
The eye thing is really bad though and she didn't mention how bad even to me but she's had what all the literature calls a "curtain" on her sight since Sat. (she thought it was hazy outside but it was clear as a bell) and yesterday she started getting the shooting light flashes going on in the corners. So, I know (from eye problems I have) the retinas are, at the least, being stressed.
Hopefully tomorrow will shed more light on all of this!!
Thanks Jenn for everything you post on here – I read it all and it always helps!!
Holding best thoughts for you too!!
Barb
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- May 10, 2016 at 2:05 am
Thank you Jenn. Earlier today I read your thread from March where you described the "ringing" you were experiencing and so was hoping that my sister's could be a similar build-up of fluid. Glad to know that the nasal spray is helping you!!!
It was after reading about tinnitus in general on here that I called her and told her to call her onc and suggested to her that maybe a brain scan was in order. Of course, that freaked her a bit … but, she agreed, it's way better to know than not to know.
The eye thing is really bad though and she didn't mention how bad even to me but she's had what all the literature calls a "curtain" on her sight since Sat. (she thought it was hazy outside but it was clear as a bell) and yesterday she started getting the shooting light flashes going on in the corners. So, I know (from eye problems I have) the retinas are, at the least, being stressed.
Hopefully tomorrow will shed more light on all of this!!
Thanks Jenn for everything you post on here – I read it all and it always helps!!
Holding best thoughts for you too!!
Barb
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- May 10, 2016 at 2:42 am
Thank you! Hope she gets relief from these side effects soon, it's never fun having to investigate and diagnose the side effects on top of dealing with everything else!
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- May 11, 2016 at 11:48 pm
Thank you CorgiMom!
Just an update, she saw onc yesterday and the doc mentioned steroids (didn't specify steroid eye drops) but said she didn't want to prescribe any yet because, protocol again, it would mean interrupting treatment. They grudgingly admit the tinnitus must be related because it's too coincidental.
Onc wants a brain MRI within 5 days and arranged a referral to an eye specialist. That eye app't. is set for Fri. a.m. and no word on the scan app't. yet but, if on schedule, it should be before the weekend is over. So, we'll soon know what's going on.
If this is all happening due to brain mets, we won't be totally shocked, and, thanks to all the great info that we've gained from this board and its members, we know that gamma knife can do miracles there. It also seems that, just as she responded big time to Taf/Mek, she's responding just as well with ipi/nivo.
Can't say it enough – we're so grateful for the advice and information found here – it continues to give us hope and the courage to face whatever the future holds!!!
Best to all!
Barb
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- May 11, 2016 at 11:48 pm
Thank you CorgiMom!
Just an update, she saw onc yesterday and the doc mentioned steroids (didn't specify steroid eye drops) but said she didn't want to prescribe any yet because, protocol again, it would mean interrupting treatment. They grudgingly admit the tinnitus must be related because it's too coincidental.
Onc wants a brain MRI within 5 days and arranged a referral to an eye specialist. That eye app't. is set for Fri. a.m. and no word on the scan app't. yet but, if on schedule, it should be before the weekend is over. So, we'll soon know what's going on.
If this is all happening due to brain mets, we won't be totally shocked, and, thanks to all the great info that we've gained from this board and its members, we know that gamma knife can do miracles there. It also seems that, just as she responded big time to Taf/Mek, she's responding just as well with ipi/nivo.
Can't say it enough – we're so grateful for the advice and information found here – it continues to give us hope and the courage to face whatever the future holds!!!
Best to all!
Barb
-
- May 11, 2016 at 11:48 pm
Thank you CorgiMom!
Just an update, she saw onc yesterday and the doc mentioned steroids (didn't specify steroid eye drops) but said she didn't want to prescribe any yet because, protocol again, it would mean interrupting treatment. They grudgingly admit the tinnitus must be related because it's too coincidental.
Onc wants a brain MRI within 5 days and arranged a referral to an eye specialist. That eye app't. is set for Fri. a.m. and no word on the scan app't. yet but, if on schedule, it should be before the weekend is over. So, we'll soon know what's going on.
If this is all happening due to brain mets, we won't be totally shocked, and, thanks to all the great info that we've gained from this board and its members, we know that gamma knife can do miracles there. It also seems that, just as she responded big time to Taf/Mek, she's responding just as well with ipi/nivo.
Can't say it enough – we're so grateful for the advice and information found here – it continues to give us hope and the courage to face whatever the future holds!!!
Best to all!
Barb
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- May 10, 2016 at 2:42 am
Thank you! Hope she gets relief from these side effects soon, it's never fun having to investigate and diagnose the side effects on top of dealing with everything else!
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- May 10, 2016 at 2:42 am
Thank you! Hope she gets relief from these side effects soon, it's never fun having to investigate and diagnose the side effects on top of dealing with everything else!
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- May 12, 2016 at 11:01 pm
Hi Barb,
So glad your sister has you in her corner!! And while it sounds like you need to make sure a variety of things are NOT going on (and have taken steps to address that!!!) many of the things you described can certainly be due to adverse side effects from immunotherapy. Not to frighten you or your sister at all….but here is a post addressing side effects that have been discovered as more folks undergo these therapies.
Being an advocate at the front end, as you are being for your sister, is certainly the best first step!! Hang in there. Celeste
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- May 12, 2016 at 11:01 pm
Hi Barb,
So glad your sister has you in her corner!! And while it sounds like you need to make sure a variety of things are NOT going on (and have taken steps to address that!!!) many of the things you described can certainly be due to adverse side effects from immunotherapy. Not to frighten you or your sister at all….but here is a post addressing side effects that have been discovered as more folks undergo these therapies.
Being an advocate at the front end, as you are being for your sister, is certainly the best first step!! Hang in there. Celeste
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- May 12, 2016 at 11:01 pm
Hi Barb,
So glad your sister has you in her corner!! And while it sounds like you need to make sure a variety of things are NOT going on (and have taken steps to address that!!!) many of the things you described can certainly be due to adverse side effects from immunotherapy. Not to frighten you or your sister at all….but here is a post addressing side effects that have been discovered as more folks undergo these therapies.
Being an advocate at the front end, as you are being for your sister, is certainly the best first step!! Hang in there. Celeste
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- May 15, 2016 at 4:49 am
Thank you Celeste for your encouragement and all of the invaluable information you provide!! I've read all of the side effects postings on your blog, as well as other material there. LOL – I often have this forum open in one window, your blog in another and another window for searching – it's very easy to get lost in acronyms, medical terms, cell parts, gene mutations … and just an avalanche of other stuff.
Seriously, if someone isn't a medical person, the learning curve on this disease is huge and urgent and I find it totally necessary to spend hours "educating" myself. It seems that half the battle with understanding treatment is in asking the right questions >> informed and relevant!
Update on my sis – brain MRI was Fri. morning and opthamologist was right after. There is inflammation of the retina and two kinds of drops were prescribed, one of them is Prednizone. She thinks that after only one day, they're already working. The opthamologist didn't want to hear/know about the tinnitus … but I understand, from your blog post, that there's enough evidence to suggest it can be linked to treatment. Even her onc called it "too coincidental."
My sister missed a call from her onc, several hours after her MRI – doc left a message saying she had wanted to discuss the results but that it could wait for their next followup app't. So, my sister thinks that's good news – thinking the doc would've wanted to see her right away if the scan showed something. I'm not that optimistic about the scan being clear … but again, I'm not gonna freak out if it isn't …. because I feel like I am informed, and therefore, prepared.
Many, many thanks again!!
Barb
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- May 15, 2016 at 4:49 am
Thank you Celeste for your encouragement and all of the invaluable information you provide!! I've read all of the side effects postings on your blog, as well as other material there. LOL – I often have this forum open in one window, your blog in another and another window for searching – it's very easy to get lost in acronyms, medical terms, cell parts, gene mutations … and just an avalanche of other stuff.
Seriously, if someone isn't a medical person, the learning curve on this disease is huge and urgent and I find it totally necessary to spend hours "educating" myself. It seems that half the battle with understanding treatment is in asking the right questions >> informed and relevant!
Update on my sis – brain MRI was Fri. morning and opthamologist was right after. There is inflammation of the retina and two kinds of drops were prescribed, one of them is Prednizone. She thinks that after only one day, they're already working. The opthamologist didn't want to hear/know about the tinnitus … but I understand, from your blog post, that there's enough evidence to suggest it can be linked to treatment. Even her onc called it "too coincidental."
My sister missed a call from her onc, several hours after her MRI – doc left a message saying she had wanted to discuss the results but that it could wait for their next followup app't. So, my sister thinks that's good news – thinking the doc would've wanted to see her right away if the scan showed something. I'm not that optimistic about the scan being clear … but again, I'm not gonna freak out if it isn't …. because I feel like I am informed, and therefore, prepared.
Many, many thanks again!!
Barb
-
- May 15, 2016 at 4:49 am
Thank you Celeste for your encouragement and all of the invaluable information you provide!! I've read all of the side effects postings on your blog, as well as other material there. LOL – I often have this forum open in one window, your blog in another and another window for searching – it's very easy to get lost in acronyms, medical terms, cell parts, gene mutations … and just an avalanche of other stuff.
Seriously, if someone isn't a medical person, the learning curve on this disease is huge and urgent and I find it totally necessary to spend hours "educating" myself. It seems that half the battle with understanding treatment is in asking the right questions >> informed and relevant!
Update on my sis – brain MRI was Fri. morning and opthamologist was right after. There is inflammation of the retina and two kinds of drops were prescribed, one of them is Prednizone. She thinks that after only one day, they're already working. The opthamologist didn't want to hear/know about the tinnitus … but I understand, from your blog post, that there's enough evidence to suggest it can be linked to treatment. Even her onc called it "too coincidental."
My sister missed a call from her onc, several hours after her MRI – doc left a message saying she had wanted to discuss the results but that it could wait for their next followup app't. So, my sister thinks that's good news – thinking the doc would've wanted to see her right away if the scan showed something. I'm not that optimistic about the scan being clear … but again, I'm not gonna freak out if it isn't …. because I feel like I am informed, and therefore, prepared.
Many, many thanks again!!
Barb
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