General Medical issues thread

[love_the_life]

Its a blooming hard journey (from someone who is on it but with a different cancer and still undergoing monthly treatment plus). At least you seem to have your sense of humour still and that is part of what keeps you going (as well as AFF ). Those hospital stays are long and rather gruesome....the observations, just as you fall asleep eventually are a pain in the b..t but probably necessary, although sometimes, I don't think so, but we are not the best observers of our body functions in this state. I found when I was covered with mouth ulcers that the 'pink stuff' Niltstat helped, hopefully you are on it. I wish you all the best going forward and you do have a community who cares here.

I have just completed a 5 day intensive course of targeted therapy with cladribine for my surprise hairy cell leukaemia. It wasn't terrible, but certainly wasn't something I'm going to be keen to do again in a few years.

Because of the high risk of tumour lysis syndrome (basically when a bunch of cancer cells all die at once from the chemo and release a lot of toxins causing serious medical impact), I stayed in hospital for the full course so they could monitor me and give continuous IV hydration to reduce likelihood of trouble.

Got home early Saturday afternoon and the first thing I did was take a nap - for 5 hours. Then went to bed for the night at 9.30 and slept a full 12 hours. Sunday was a 1 hr nap and 10.5 hours overnight. Hospitals are not very relaxing - I got very little sleep there between the IV machine beeping for various reasons every couple of hours (eg they forgot to turn the power on, so flat battery; air in line, fluids low etc), being constantly woken to have temp and BP recorded and all the thoughtful visitors who left their patient's room to make loud phone calls - right poutside my room I can tell you there was one little boy called Lachlan who was clearly delighted but suspicious when his harried mother told him he could make toast and ice cream for dinner, but not to be greedy

Daily blood tests or sometimes more as the staff stuffed up in multiple ways (eg on vial was coagulated before it could be tested, forgot to get the full number of vials, used the wrong vial) are the final insult to injury. Between that and the cannulas (and the leukaemia too I guess), I'm covered in painful bruises. I'm now on blood tests every second day, so that's a bit better, but I actually cried today at the thought of having to go do that. I don't normally mind blood tests that much, and have been a blood donor (not any more).

Main discomforts at this time are the absolutely foul taste in the mouth that makes everything taste like mud and rust. Nausea. Skin off my palate and mouth ulcers on my gums and tongue. None of which is conducive to eating or even drinking water. Felling quite low.

Plus I have an absolute F@cktonne of medicines to take - antibiotics, anti fungals, antivirals, allopurinol (anti toxin), three types of anti nausea meds plus my usual statin and BP medication. It's a lot.

Onwards and upwards.

Hugs to both of you - and hoping that both outcomes will be positive.
And I have been complaining about a frozen shoulder - you put it in perspective.

 

[Seat0B]

Its a blooming hard journey (from someone who is on it but with a different cancer and still undergoing monthly treatment plus). At least you seem to have your sense of humour still and that is part of what keeps you going (as well as AFF ). Those hospital stays are long and rather gruesome....the observations, just as you fall asleep eventually are a pain in the b..t but probably necessary, although sometimes, I don't think so, but we are not the best observers of our body functions in this state. I found when I was covered with mouth ulcers that the 'pink stuff' Niltstat helped, hopefully you are on it. I wish you all the best going forward and you do have a community who cares here.

Thanks for your empathy @maia200.. they have me using a bicarbonate and sodium chloride bottled mouthwash which does help a bit.I’ll get Mr Seat 0A to look into the pink one though as my mouth is pretty sore.

 

[Seat0B]

Hugs to both of you - and hoping that both outcomes will be positive.
And I have been complaining about a frozen shoulder - you put it in perspective.

You know what @love_the_life, it IS cough to have a frozen shoulder. I’ve seen how it affected my mum for quite a while. Just because someone else might have something “worse” does not lessen your experience at all. And for me knowing that others have it worse does not really make me feel better, because many more have it better, if you follow my reasoning.

So complain away - it really helps me to have a vent and I suspect I’m not alone in that.

And thanks for your best wishes.

 

[maia200]

Hugs to both of you - and hoping that both outcomes will be positive.
And I have been complaining about a frozen shoulder - you put it in perspective.

It's all relevant and we all have our challenges and opportunities. A frozen shoulder is also terribly limiting and not to be wished on anyone.

Post automatically merged: Sep 18, 2023

Thanks for your empathy @maia200.. they have me using a bicarbonate and sodium chloride bottled mouthwash which does help a bit.I’ll get Mr Seat 0A to look into the pink one though as my mouth is pretty sore.

I remember I couldn't eat and I couldn't have anything with any salt when I did....so boring... I almost thought bring back qantas economy menu

 

[Seat0B]

It's all relevant and we all have our challenges and opportunities. A frozen shoulder is also terribly limiting and not to be wished on anyone.

Post automatically merged: Sep 18, 2023

I remember I couldn't eat and I couldn't have anything with any salt when I did....so boring... I almost thought bring back qantas economy menu

It does make eating and more importantly fluid intake very challenging with sore mouth, nausea and foul taste. I hope that goes away soon. It’s the worst par.

 

[TheRealTMA]

You know what @love_the_life, it IS cough to have a frozen shoulder. I’ve seen how it affected my mum for quite a while. Just because someone else might have something “worse” does not lessen your experience at all. And for me knowing that others have it worse does not really make me feel better, because many more have it better, if you follow my reasoning.

So complain away - it really helps me to have a vent and I suspect I’m not alone in that.

And thanks for your best wishes.

As my old GP used to say, “what’s the difference between minor and major surgery? Minor surgery is done on you, major on me.”

 

[TheRealTMA]

It does make eating and more importantly fluid intake very challenging with sore mouth, nausea and foul taste. I hope that goes away soon. It’s the worst par.

MrsTMA says bicarbonate gargle can be useful, as with lemon and ginger tea, plus Betadine mouthwash maybe useful.

Concentrated Sore Throat Gargle | Betadine® Australia

Sore Throat Gargle by Betadine is a concentrated antibacterial formula used to aid in the treatment of severe sore throats. Find out more here.

betadine.com.au

 

[Seat0B]

MrsTMA says bicarbonate gargle can be useful, as with lemon and ginger tea, plus Betadine mouthwash maybe useful.

Concentrated Sore Throat Gargle | Betadine® Australia

Sore Throat Gargle by Betadine is a concentrated antibacterial formula used to aid in the treatment of severe sore throats. Find out more here.

betadine.com.au

Thanks for these helpful suggestions.
I actually discovered lemon and ginger tea myself today, via ChatGPT Managed to drink 4 cups over the course of the day. That’s an improvement over yesterday where I just couldn’t drink much all. Also finding sucking on ice cubes is a help - but a very slow way to take in fluids.

 

[Pushka]

Hugs to both of you - and hoping that both outcomes will be positive.
And I have been complaining about a frozen shoulder - you put it in perspective.

Sure but having had a frozen shoulder it's also extremely painful and takes a while to resolve. Depending on what stage you are at, eg freezing up or now locked, if the latter a cortisone shot may help.

 

[JohnK]

@love_the_life there's always someone worse off than us and we whinge.

I know I do more than my fair share of whinging but even if nothing is major it can still be debilitating.

There must be some tendon above the knee? Quadriceps tendon? It's been giving me trouble for a long time when I'm sitting. Extreme pain when I'm seated and need to move the leg to a different position. If I put hand just above the left knee to support this was fine. The same when I tried to get up from seated position.

The past few weeks I've noticed this has gotten worse to the point now where it almost feels like its locked/frozen in place making getting up even more difficult. This is extremely uncomfortable. Some days I'm almost in tears from the pain and discomfort.

Last night I was sitting down eating and must have somehow missed that left knee was locked and when I tried to get up there was this loud cracking noise. I was in a lot of pain and limping for 5 minutes or so.

So whatever condition is there has not yet been diagnosed. If I said there is not a spot on the body that does not have chronic pain people wouldn't believe me. Doctors have asked many times where it hurts and I say everywhere and they just look at me as if I've misunderstood the question.

So what do you do? It's too much for any one person to cope. I do not want to be on medication daily. Way too many joints with issues for cortisone injections in each joint. I wish there was an easy answer but doesn't look like I'm going to find one. Each day is becoming more and more of a struggle.

 

[prozac]

I have just completed a 5 day intensive course of targeted therapy with cladribine for my surprise hairy cell leukaemia. It wasn't terrible, but certainly wasn't something I'm going to be keen to do again in a few years.

Because of the high risk of tumour lysis syndrome (basically when a bunch of cancer cells all die at once from the chemo and release a lot of toxins causing serious medical impact), I stayed in hospital for the full course so they could monitor me and give continuous IV hydration to reduce likelihood of trouble.

Got home early Saturday afternoon and the first thing I did was take a nap - for 5 hours. Then went to bed for the night at 9.30 and slept a full 12 hours. Sunday was a 1 hr nap and 10.5 hours overnight. Hospitals are not very relaxing - I got very little sleep there between the IV machine beeping for various reasons every couple of hours (eg they forgot to turn the power on, so flat battery; air in line, fluids low etc), being constantly woken to have temp and BP recorded and all the thoughtful visitors who left their patient's room to make loud phone calls - right poutside my room I can tell you there was one little boy called Lachlan who was clearly delighted but suspicious when his harried mother told him he could make toast and ice cream for dinner, but not to be greedy

Daily blood tests or sometimes more as the staff stuffed up in multiple ways (eg on vial was coagulated before it could be tested, forgot to get the full number of vials, used the wrong vial) are the final insult to injury. Between that and the cannulas (and the leukaemia too I guess), I'm covered in painful bruises. I'm now on blood tests every second day, so that's a bit better, but I actually cried today at the thought of having to go do that. I don't normally mind blood tests that much, and have been a blood donor (not any more).

Main discomforts at this time are the absolutely foul taste in the mouth that makes everything taste like mud and rust. Nausea. Skin off my palate and mouth ulcers on my gums and tongue. None of which is conducive to eating or even drinking water. Felling quite low.

Plus I have an absolute F@cktonne of medicines to take - antibiotics, anti fungals, antivirals, allopurinol (anti toxin), three types of anti nausea meds plus my usual statin and BP medication. It's a lot.

Onwards and upwards.

Its a blooming hard journey (from someone who is on it but with a different cancer and still undergoing monthly treatment plus). At least you seem to have your sense of humour still and that is part of what keeps you going (as well as AFF ). Those hospital stays are long and rather gruesome....the observations, just as you fall asleep eventually are a pain in the b..t but probably necessary, although sometimes, I don't think so, but we are not the best observers of our body functions in this state. I found when I was covered with mouth ulcers that the 'pink stuff' Niltstat helped, hopefully you are on it. I wish you all the best going forward and you do have a community who cares here.

I also came home from hospital exhausted. @Seat0B Yes, all the drugs are bewildering at first. I put all the cancer drugs into one container and kept separate from other and found this made it easier to keep track of medication and schedule. Then you get the ones that are twice a day BUT only on Mondays and Thursdays. I seem to have boxes of excess Vaclovir left over.
As of yesterday I am officially at end of my chemo cycles, the last one the worst. Yes, the mouth ulcers and all the little open cuts are the pits. Also I get thrush in the throat each cycle. @maia200 The Nilstat works well as well as a fungicide tablet (Fungil?). @maia200 Do you have problems overheating? I keep having hot flushes, I am having one right now, my bald head just bursts into beads of sweat. 10 minutes later my head might be so cold I need to put the beanie back on.

 

[prozac]

Thanks for your empathy @maia200.. they have me using a bicarbonate and sodium chloride bottled mouthwash which does help a bit.I’ll get Mr Seat 0A to look into the pink one though as my mouth is pretty sore.

The bicarb only helps a bit. The Nillstat definitely works (for thrush also), you need a script. The Fungil (?) lozenges are over the counter and worthwhile also as an adjunct to Nillstat.

 

[Seat0B]

Then you get the ones that are twice a day BUT only on Mondays and Thursdays

I have those! And then there’s the one with food, and the two 30 mins before food - it uses up all my limited energy just work8ng out what pill I’m supposed to be taking next . Today they added an antihistamine for me to deal with rash which has broken out on my legs, torso and back. It’s quite funny if you take a step back.

 

[Seat0B]

The bicarb only helps a bit. The Nillstat definitely works (for thrush also), you need a script. The Fungil (?) lozenges are over the counter and worthwhile also as an adjunct to Nillstat.

I will ask my Dr to give me that when I see him on Monday if things aren't any better. How long do the mouth ulcers usually last? I guess I naively thought they would go when the chemo stopped, but

 

[Quickstatus]

If I put hand just above the left knee to support this was fine

Sounds like patellofemoral arthritis? - arthritis in the joint between the thigh bone and the kneecap bone,
Or a patellofemoral bursitis?

fungicide tablet (Fungil?)

Fungilin Lozenges - requires a script

The Nillstat definitely works (for thrush also), you need a script

Nilstat (Nystatin) Drops available without a script. Reminder to read the instructions - its not supposed to be immediately swallowed

 

[Seat0B]

As of yesterday I am officially at end of my chemo cycles

Congratulations. Big milestone and I hope you have a successful outcome.

 

[Quickstatus]

As of yesterday I am officially at end of my chemo cycles

 

[Quickstatus]

@prozac , @Seat0B and others - mouth ulcers post chemo or persistent mouth ulcers due to illness, and chronic mouth ulcers

This is something the Palliative guys use

Kenalog oral paste. Its a thick paste - put it in before retiring for the night (its a topical steroi_)
As usual check with your (non AFF) health care professional
No prescription required

 

[Quickstatus]

Mouth ulcers subthread reminds me of the weird medical word "Aphthous" as in "Aphthous ulcers". In common parlance AKA "Canker sores".
Derived from the Greek "Aphthi" - inflame or set on fire
Its a silly word and have not heard of it used professionally but I'm not a dermatologist.

 

[VPS]

Mouth ulcers subthread reminds me of the weird medical word "Aphthous" as in "Aphthous ulcers". In common parlance AKA "Canker sores".
Derived from the Greek "Aphthi" - inflame or set on fire
Its a silly word and have not heard of it used professionally but I'm not a dermatologist.

When I have aphthous ulcers it certainly feels like my throat is on fire