Hello,
Has anyone ever had a nosebleed that won't stop?
My mum who has multiple myeloma (IgA lambda) has had a nosebleed since Monday. Bled for 5 hours on Monday, took her to A&E and they have put a nose pack in the side that's bleeding. Left in for 48 hours, hoping it would stop the bleeding. Tried to take out this morning and unfortunately it's still bleeding.
They are now talking about putting another nose pack in the other side of her nose for tonight and then doing an operation (under general anesthetic) tomorrow morning to try and stop the bleeding. No one is focusing on or even looking at the myeloma. Apparently her platelets are fine and she doesn't need a transfusion.
I have rang her myeloma doctor and am waiting for a call back but would welcome any thoughts / ideas from anyone?
Mum has been off treatment for a year and her myeloma has just recently relapsed – paraproteins are around 70ish. Mum is shortly going to begin treatment – probably cyclophosphamide, Kyprolis and dex trial but had pneumonia a couple of weeks ago so we were waiting a bit for her to make a recovery from that before starting treatment but now this has kicked off!
Thanks in advance for any help / ideas!
Best wishes
Lex X
Forums
8 posts
• Page 1 of 1
Re: Nosebleed that won't stop
No, but my stepson did, and we got the following advice:
Lean forward slightly with the head tilted forward. Leaning back or tilting the head back allows the blood to run back into the sinuses and throat and can cause gagging or inhaling the blood. Hold the nose for at least five minutes. Repeat as necessary until the nose has stopped bleeding.
Good luck!
Lean forward slightly with the head tilted forward. Leaning back or tilting the head back allows the blood to run back into the sinuses and throat and can cause gagging or inhaling the blood. Hold the nose for at least five minutes. Repeat as necessary until the nose has stopped bleeding.
Good luck!
-
JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: Nosebleed that won't stop
Hello everyone,
Just thought I would update everyone on how the situation with Mum's nosebleed turned out so that perhaps our experience can help others / save time in the future.
Here's a chronology of events as they unfolded (I have included as much detail as possible; apologies if it is too much!):
26 June, 2016 - 12 noon - Mum's nose starts bleeding and won't stop. Mum leaves it 2-3 hours hoping it will eventually stop. Didn't stop so around 3/4 p.m. she called the dedicated emergency myeloma number at the hospital and they advised her to go to A&E as they are the only ones with the facility to stop the bleeding quick enough (as the hospital Mum goes to for her multiple myeloma does not have an A&E department).
5/6 p.m. - seen by an ear, nose and throat ("ENT") specialist who suggests that the only solution to stop the bleeding in the interim is to put a nose pack up the nostril where the blood is coming from. So the nose pack goes in without any pain relief or general anesthetic (Mum said the pain was worse than childbirth!). Once the nose pack was in Mum's nose, they then inflated it, which put pressure on the "leak" with the idea of hopefully stopping the bleeding. They kept her in overnight.
27 June, 2016 - Nose pack still in and Mum under observation all day. While the nosepack was in, Mum wasn't allowed any hot food or drinks (they didn't explain why).
28 June, 2016 - 11 a.m. - ENT team deflate the nose pack to see if the bleeding has stopped. Bleeding immediately starts again, so ENT team takes out the nose pack and replaces it with a new nose pack (we were told that the nose pack shouldn't be in for more than 48 hours). This time Mum asks whether there is any pain relief. They sprayed some pain relief spray on her face and over her nose which apparently helped with the pain a bit (no idea why this wasn't offered to her the first time). The ENT team advised that they would leave the new nose pack in until tomorrow morning and try to remove it again. They said if the bleeding still hasn't stopped by then, Mum would have to have surgery on her nose, as she must have a weak / broken capillary in her nose which they would cauterise. We mentioned the myeloma at every turn, but the ENT team didn't seem to know what myeloma was and weren't talking to Mum's myeloma doctors for their input and didn't seem to think it was important at all to consider the nosebleed in the context of the myeloma. What they were doing and telling us didn't sit right with us. Luckily that afternoon, we had an appointment with Mum's myeloma specialist anyway, but at a different hospital. Mum and I left the hospital and got a taxi over to the appointment (without telling anyone or they no doubt would have tried to stop us!).
1.30 p.m. - As we sat in the waiting room waiting to see Mum's myeloma specialist, Mum was being sick and coughing up blood. This was because the nose pack wasn't properly stopping the nosebleed and so the blood was running down the back of Mum's throat and she was swallowing it. Anyway, we finally got in to see Mum's myeloma specialist (after a 2 hour wait!). Mum's myeloma specialist said the cause of the bleeding was likely to be due to hyperviscosity (i.e. her blood being too thick) because Mum's paraproteins are too high (around 70 g/l, or 7.0 g/dl). Mum also had other symptoms that demonstrated hyperviscosity, i.e., headache, blurred vision, confusion / fuzziness, can't stand the light etc). Mum's myeloma specialist was horrified when we told her that the ENT team had recommended surgery, as Mum's myeloma specialist said undergoing a general anesthetic with symptoms of hyperviscosity could cause a stroke and in all likelihood would not stop the bleeding anyway!
Mum's myeloma specialist recommended the following steps:
1. 29 June, 2016 - 11 a.m. - Mum had a plasma exchange ASAP to temporarily reduce the paraprotein in her blood (and thus immediately reduce the symptoms of hyperviscosity). For anyone that doesn't know, a plasma exchange is very similar to having your stem cells harvested. Basically, they take your blood out of one arm, spin it through a machine, take out the paraprotein, and put your blood back in again. Basically a temporary way of reducing your paraprotein. Mum's doc recommended this just in case Mum's nose hadn't stopped bleeding and she did need surgery. Basically they were trying to get Mum in the best possible state for surgery if she needed it;
2. 30 June, 2016 - The next day after the plasma exchange, Mum also began treatment for her myeloma. She has started on cyclophosphamide, thalidomide, and dexamethasone (CTD). She is also still taking EPO injections once a week to keep her hemoglobin up, at least for the first few weeks of treatment until (fingers crossed) it starts working and the paraproteins come down and she's not so anemic. The ENT team from the other hospital were supposed to come over and see Mum to take the nose pack out, but they never came! As a result, the nose pack was left in a lot longer than any of us wanted, and Mum was put on antibiotics in the meantime to prevent infection. Her nose had literally tripled in size as she'd had a nosepack in for a week now (although not the same one!).
3. 2 July, 2016 - 5 p.m. - Eventually, one of the myeloma docs who had done some ENT training ended up deflating the nose pack. No bleeding. They then left the nose pack in overnight to see if any bleeding occurred before removing the nosepack completely.
4. 3 July, 2016 - 7 a.m - They removed the nosepack completely. No bleeding - hooray! Although a bit of spotting for a day or two while the old dried blood / clot from inside her nose came out naturally.
As at today (6 July, 2016), no bleeding. Mum feeling fine on CTD treatment, although no blood results yet. We will be going back to see her myeloma specialist in a couple of weeks for an update, but the "nosebleed" emergency is hopefully behind us (fingers crossed!).
Just thought it was important to update everyone. Sorry if there's too much detail, but if you ever have to go through this one (and I hope you don't!), you'll be glad I spent the time writing all of this!
All the best,
Lex X
Just thought I would update everyone on how the situation with Mum's nosebleed turned out so that perhaps our experience can help others / save time in the future.
Here's a chronology of events as they unfolded (I have included as much detail as possible; apologies if it is too much!):
26 June, 2016 - 12 noon - Mum's nose starts bleeding and won't stop. Mum leaves it 2-3 hours hoping it will eventually stop. Didn't stop so around 3/4 p.m. she called the dedicated emergency myeloma number at the hospital and they advised her to go to A&E as they are the only ones with the facility to stop the bleeding quick enough (as the hospital Mum goes to for her multiple myeloma does not have an A&E department).
5/6 p.m. - seen by an ear, nose and throat ("ENT") specialist who suggests that the only solution to stop the bleeding in the interim is to put a nose pack up the nostril where the blood is coming from. So the nose pack goes in without any pain relief or general anesthetic (Mum said the pain was worse than childbirth!). Once the nose pack was in Mum's nose, they then inflated it, which put pressure on the "leak" with the idea of hopefully stopping the bleeding. They kept her in overnight.
27 June, 2016 - Nose pack still in and Mum under observation all day. While the nosepack was in, Mum wasn't allowed any hot food or drinks (they didn't explain why).
28 June, 2016 - 11 a.m. - ENT team deflate the nose pack to see if the bleeding has stopped. Bleeding immediately starts again, so ENT team takes out the nose pack and replaces it with a new nose pack (we were told that the nose pack shouldn't be in for more than 48 hours). This time Mum asks whether there is any pain relief. They sprayed some pain relief spray on her face and over her nose which apparently helped with the pain a bit (no idea why this wasn't offered to her the first time). The ENT team advised that they would leave the new nose pack in until tomorrow morning and try to remove it again. They said if the bleeding still hasn't stopped by then, Mum would have to have surgery on her nose, as she must have a weak / broken capillary in her nose which they would cauterise. We mentioned the myeloma at every turn, but the ENT team didn't seem to know what myeloma was and weren't talking to Mum's myeloma doctors for their input and didn't seem to think it was important at all to consider the nosebleed in the context of the myeloma. What they were doing and telling us didn't sit right with us. Luckily that afternoon, we had an appointment with Mum's myeloma specialist anyway, but at a different hospital. Mum and I left the hospital and got a taxi over to the appointment (without telling anyone or they no doubt would have tried to stop us!).
1.30 p.m. - As we sat in the waiting room waiting to see Mum's myeloma specialist, Mum was being sick and coughing up blood. This was because the nose pack wasn't properly stopping the nosebleed and so the blood was running down the back of Mum's throat and she was swallowing it. Anyway, we finally got in to see Mum's myeloma specialist (after a 2 hour wait!). Mum's myeloma specialist said the cause of the bleeding was likely to be due to hyperviscosity (i.e. her blood being too thick) because Mum's paraproteins are too high (around 70 g/l, or 7.0 g/dl). Mum also had other symptoms that demonstrated hyperviscosity, i.e., headache, blurred vision, confusion / fuzziness, can't stand the light etc). Mum's myeloma specialist was horrified when we told her that the ENT team had recommended surgery, as Mum's myeloma specialist said undergoing a general anesthetic with symptoms of hyperviscosity could cause a stroke and in all likelihood would not stop the bleeding anyway!
Mum's myeloma specialist recommended the following steps:
1. 29 June, 2016 - 11 a.m. - Mum had a plasma exchange ASAP to temporarily reduce the paraprotein in her blood (and thus immediately reduce the symptoms of hyperviscosity). For anyone that doesn't know, a plasma exchange is very similar to having your stem cells harvested. Basically, they take your blood out of one arm, spin it through a machine, take out the paraprotein, and put your blood back in again. Basically a temporary way of reducing your paraprotein. Mum's doc recommended this just in case Mum's nose hadn't stopped bleeding and she did need surgery. Basically they were trying to get Mum in the best possible state for surgery if she needed it;
2. 30 June, 2016 - The next day after the plasma exchange, Mum also began treatment for her myeloma. She has started on cyclophosphamide, thalidomide, and dexamethasone (CTD). She is also still taking EPO injections once a week to keep her hemoglobin up, at least for the first few weeks of treatment until (fingers crossed) it starts working and the paraproteins come down and she's not so anemic. The ENT team from the other hospital were supposed to come over and see Mum to take the nose pack out, but they never came! As a result, the nose pack was left in a lot longer than any of us wanted, and Mum was put on antibiotics in the meantime to prevent infection. Her nose had literally tripled in size as she'd had a nosepack in for a week now (although not the same one!).
3. 2 July, 2016 - 5 p.m. - Eventually, one of the myeloma docs who had done some ENT training ended up deflating the nose pack. No bleeding. They then left the nose pack in overnight to see if any bleeding occurred before removing the nosepack completely.
4. 3 July, 2016 - 7 a.m - They removed the nosepack completely. No bleeding - hooray! Although a bit of spotting for a day or two while the old dried blood / clot from inside her nose came out naturally.
As at today (6 July, 2016), no bleeding. Mum feeling fine on CTD treatment, although no blood results yet. We will be going back to see her myeloma specialist in a couple of weeks for an update, but the "nosebleed" emergency is hopefully behind us (fingers crossed!).
Just thought it was important to update everyone. Sorry if there's too much detail, but if you ever have to go through this one (and I hope you don't!), you'll be glad I spent the time writing all of this!
All the best,
Lex X
Re: Nosebleed that won't stop
Lex,
That's a really helpful post. I don't recall reading a history of how hyperviscosity actually impacted a patient on this forum. Glad things worked out.
That's a really helpful post. I don't recall reading a history of how hyperviscosity actually impacted a patient on this forum. Glad things worked out.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Nosebleed that won't stop
Glad to hear you mom's nose bleed has stopped and everything is much better!
My dad recently had a serious nose bleed that would run like a slow faucet and it lasted for hours also. I had thought it was because his blood was too thin. Now I see it is just the opposite! He is 94 and insists on living in his own house. So I've been worried. This has never happened before. I will make sure he goes to the ER next time.
Thanks for posting! This helps a lot.
My dad recently had a serious nose bleed that would run like a slow faucet and it lasted for hours also. I had thought it was because his blood was too thin. Now I see it is just the opposite! He is 94 and insists on living in his own house. So I've been worried. This has never happened before. I will make sure he goes to the ER next time.
Thanks for posting! This helps a lot.
-
SandiBeach
Re: Nosebleed that won't stop
I had hyperviscosity when I was diagnosed. I had low level bleeding (whenever I blew my nose there was blood), blood in my bowel, and other symptoms associated with it like headaches and vision issues and nerve issues. It is not that common. I had very high protein level (almost 100 g/L M-spike = 10 g/dL).
I was treated with high-dose steroids, and then started chemo a few days later. No plasma exchange for me. I was put on blood thinners, though, as I was at risk for stroke and had chest pains so they were concerned.
No long lasting issues either. Once the protein lowered, symptoms improved.
I was treated with high-dose steroids, and then started chemo a few days later. No plasma exchange for me. I was put on blood thinners, though, as I was at risk for stroke and had chest pains so they were concerned.
No long lasting issues either. Once the protein lowered, symptoms improved.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Nosebleed that won't stop
Another possible cause of nosebleeds is low platelets. My platelets drop very low after one part of my leukemia treatment. How I know is that my nose starts to bleed and won't stop. Both times it happened to me I ended up in the ER and had platelet transfusions.
Now when I have labs done on a Thursday and my platelet level is close to the point where they would infuse platelets, they have me come in again the next day to see if they have dropped low enough for the infusion so that I don't end up in the ER over the weekend. So far it has worked.
One time when I was in the ER for the nose bleed the ER doctor lectured me on how nose picking can cause the nose to bleed. I told her that I wouldn't be there if my nose hadn't continued to bleed for more than 6 hours and that I had cancer and a history of low platelets. She wasn't going to order blood tests, but I insisted. She did come back to apologize when the results were in and my platelet level was at 7.
When in doubt about something, call your oncologist first or the oncology emergency number. Let them help you figure things out and what to do. I don't do it often, but I've had better results when I do than when I call my primary's office who don't understand cancer and the possibility of emergencies. Now that there is a portal system for both my oncologist and my primary, I get better results than when I used to have to call the main number and talk with a receptionist.
Nancy in Phila
Now when I have labs done on a Thursday and my platelet level is close to the point where they would infuse platelets, they have me come in again the next day to see if they have dropped low enough for the infusion so that I don't end up in the ER over the weekend. So far it has worked.
One time when I was in the ER for the nose bleed the ER doctor lectured me on how nose picking can cause the nose to bleed. I told her that I wouldn't be there if my nose hadn't continued to bleed for more than 6 hours and that I had cancer and a history of low platelets. She wasn't going to order blood tests, but I insisted. She did come back to apologize when the results were in and my platelet level was at 7.
When in doubt about something, call your oncologist first or the oncology emergency number. Let them help you figure things out and what to do. I don't do it often, but I've had better results when I do than when I call my primary's office who don't understand cancer and the possibility of emergencies. Now that there is a portal system for both my oncologist and my primary, I get better results than when I used to have to call the main number and talk with a receptionist.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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