General Medical issues thread

[Seat0B]

Yes, it’s that lack/loss of control that’s the hardest to acceptt over how one’s’ body will behave. Had to let go and trust the docs know what they’re doing …. And there’s always something that can be tweaked. It does wear your body down by degrees. Feeling up and down is also normal.

Ate lots of blueberries n made myself walk and kept a normal routine as much as possible. Getting good sleep n staying hydrated is important.

Hope it does improv.

Thank you for these practical tips. I’ve resumed gentle ride on exercise bike. I am sleeping well. Hydration is an issue as almost everything tastes like mud with the anti-viral. I can manage some honey lemon and ginger tea and lemon lime and bitters, but that’s it.

It’s just doing my head in to have absolutely zero control over what happens - good or bad. I am not used to that. My whole life has taught me that effort = reward and apparently that’s not true. It’s existential angst.

Post automatically merged: Oct 1, 2023

I am also taking probiotics and some vitamins (magsup, B Complex, Zinc, C, ). Plain porridge on mornings of chemo week worked wonders keeping BSL consistent, now weather is improving could do oats and milk in a jar in the fridge for eating next day, great source of fermented food which is good for your depleted gut.

Thanks for your kind advice. I’m a porridge gal so right there with you. But I have been expressly told NOT to take probiotics. Wonder why?

 

[prozac]

Thank you for these practical tips. I’ve resumed gentle ride on exercise bike. I am sleeping well. Hydration is an issue as almost everything tastes like mud with the anti-viral. I can manage some honey lemon and ginger tea and lemon lime and bitters, but that’s it.

It’s just doing my head in to have absolutely zero control over what happens - good or bad. I am not used to that. My whole life has taught me that effort = reward and apparently that’s not true. It’s existential angst.

Thanks for your kind advice. I’m a porridge gal so right there with you. But I have been expressly told NOT to take probiotics. Wonder why?

Sounds like you are really doing it tough @Seat0B and sorry to hear. It will get better. I did feel guilt for not being as bad as I was told I would be during treatment. I think attitude has some affect on how you handle it, that can be hard when you have a bad day.
I'll ask about the probiotics, too late perhaps.

EDIT: Searching words "chemo treatment probiotics" came up with mostly positive studies. One did caution "However, this group also had a higher number of neutropenic complications — meaning a lower-than-normal number of neutrophils, a type of white blood cell, in the blood. This can result in an infection."

 

[mrsterryn]

For easy mixing just put it in Ninja blender with fruit/yoghurt/ice cream/milk and make smoothies.

What's the difference in price between ensure powder and ensure ready made in bottles or poppas. Many people mix ensure with milk instead of water for the extra calories per unit volume.

MrTerry has an authorisation from the hospital to buy the poppas and the power direct from the supplier. So much cheaper that way. We have just done his second order. More poppas this time

Ahhh yes KFC. Funnily enough the first meal he had after his brain surgery was Macca's lol . After this bout of surgery it was KFC. They had those wonderful potato mashies.

Yes his is done in full cream milk not water.

 

[mrsterryn]

It’s just doing my head in to have absolutely zero control over what happens - good or bad. I am not used to that. My whole life has taught me that effort = reward and apparently that’s not true. It’s existential angst.

You have my thoughts. Though it wasn't me , I watched MrTerry have those same issues. He really struggled with all the changes that happened.

 

[Seat0B]

EDIT: Searching words "chemo treatment probiotics" came up with mostly positive studies. One did caution "However, this group also had a higher number of neutropenic complications — meaning a lower-than-normal number of neutrophils, a type of white blood cell, in the blood. This can result in an infection."

I think this must be it. As I have leukaemia, the chemo obviously is targeted specifically to my blood and bone marrow cells, and all my white blood cell readings are close to zero at the moment. . My neutrophils are particularly low at 0.1 (normal is 2.0) and had risen to a “high“ of 0.25 before dropping back to 0.1. They are very worried I will get an infection. I have already been given a very scary sounding letter to take to the ED “when you do get an infection” advising that I am to be given the fast track and a full sepsis protocol which is describe in detail, without waiting for the results of any tests, just start the protocol and ideally within 30 mins of arrival at ED. Quite sobering to read this and it has made me take the instructions to isolate a lot more seriously than I otherwise might have, especially now I am feeling a fair bit better physically.

I had asked about probiotics early on because taking antibiotics usually results in an attack of thrush, which is just one more thing I could do without right now. They said absolutely not. But I guess the anti fungal I am taking must be working as so far, so good. Touch wood.

 

[prozac]

You have my thoughts. Though it wasn't me , I watched MrTerry have those same issues. He really struggled with all the changes that happened.

Thoughts with MrTerry also. I think I have been most fortunate. Whilst my initial situation was dire and complicated by not being able to able to get a biopsy for more than a week, treatment since has been straightforward with few complications. I feel lucky.

EDIT: @Seat0B , I was advised at the start of this journey that any indication of infection I should return to hospital ED and tell them I was a cancer patient, and that the hospital would prioritise treatment. My treating specialist expressed she was delighted I had not been re-admitted for infection, apparently a 60% potential.

 

[Seat0B]

You have my thoughts. Though it wasn't me , I watched MrTerry have those same issues. He really struggled with all the changes that happened.

Thanks for your kindness. And I understand how difficult it is to watch someone you love going through all this. It’s quite the challenge. I’m sending my support right back to both of you.

 

[drron]

I think this must be it. As I have leukaemia, the chemo obviously is targeted specifically to my blood and bone marrow cells, and all my white blood cell readings are close to zero at the moment. . My neutrophils are particularly low at 0.1 (normal is 2.0) and had risen to a “high“ of 0.25 before dropping back to 0.1. They are very worried I will get an infection. I have already been given a very scary sounding letter to take to the ED “when you do get an infection” advising that I am to be given the fast track and a full sepsis protocol which is describe in detail, without waiting for the results of any tests, just start the protocol and ideally within 30 mins of arrival at ED. Quite sobering to read this and it has made me take the instructions to isolate a lot more seriously than I otherwise might have, especially now I am feeling a fair bit better physically.

I had asked about probiotics early on because taking antibiotics usually results in an attack of thrush, which is just one more thing I could do without right now. They said absolutely not. But I guess the anti fungal I am taking must be working as so far, so good. Touch wood.

Don't get worried by the daily variations in your neutrophil count. The lower the numbers the higher the coefficient of variation. for the automated test the cv is 5-10% at normal cell levels but 18-20% at very low levels. So in fact there wasn't a dramatic change neccessarily in the numbers you give.

So don't worry excessively about those numbers. likely they will be up and down and all over the place. And especially remember the words of Winston Churchill - "never give in,never give in,never,never,never,never"

 

[Seat0B]

Don't get worried by the daily variations in your neutrophil count. The lower the numbers the higher the coefficient of variation. for the automated test the cv is 5-10% at normal cell levels but 18-20% at very low levels. So in fact there wasn't a dramatic change neccessarily in the numbers you give.

So don't worry excessively about those numbers. likely they will be up and down and all over the place. And especially remember the words of Winston Churchill - "never give in,never give in,never,never,never,never"

Thanks @drron - I need a bit of a pep talk at the moment. Doc said I might make it to Japan if the neutrophils get above 1.5 so I have a target to "aim" for - but no way to control my progress towards that target. It's frustrating and demoralising at the same time. It's so hard to accept there is nothing I can do to exert any influence on it at all. As I said upthread, this is causing me some existential angst. I had always believed that reward was directly correlated to effort, and now I see that is not true. i wonder who I have misjudged by my previous yardsticks, and how I might have lived my life if I didn't feel the need to keep on trying to get a better result. It is doing my head in. Too much time to think when stuck on isolation...

 

[Quickstatus]

Yes his is done in full cream milk not water.

Can also add in special stuff into ensure such as Centrum Adult multivitamin drops if Ensure intake not enough

 

[prozac]

Thanks @drron - I need a bit of a pep talk at the moment. Doc said I might make it to Japan if the neutrophils get above 1.5 so I have a target to "aim" for - but no way to control my progress towards that target. It's frustrating and demoralising at the same time. It's so hard to accept there is nothing I can do to exert any influence on it at all. As I said upthread, this is causing me some existential angst. I had always believed that reward was directly correlated to effort, and now I see that is not true. i wonder who I have misjudged by my previous yardsticks, and how I might have lived my life if I didn't feel the need to keep on trying to get a better result. It is doing my head in. Too much time to think when stuck on isolation...

Treat yourself well. There is no reward for hard work in our situation, but there is for listening to your body.
Don't set a daily target. If you wake up and feel energetic then do something, maybe prune some plants, a short walk locally away from people, bake something. If you don't feel flash then spend the day sitting on the lounge with a gentle activity interest. I spent alot of days (still do) sitting on the lounge with little activities in between if and when I felt like it. Some of my activities only last 5-10 minutes until I feel that is enough but it keeps your mind in the right space. This is for your mind, not your body. Just take each day as it unfolds after you open your eyes in the morning.

Incidentally, I cooked evening meal every day of treatment no matter how bad I felt. The planning, prep and process takes your mind off how bad you might be feeling.

 

[Seat0B]

Treat yourself well. There is no reward for hard work in our situation, but there is for listening to your body.
Don't set a daily target. If you wake up and feel energetic then do something, maybe prune some plants, a short walk locally away from people, bake something. If you don't feel flash then spend the day sitting on the lounge with a gentle activity interest. I spent alot of days (still do) sitting on the lounge with little activities in between if and when I felt like it. Some of my activities only last 5-10 minutes until I feel that is enough but it keeps your mind in the right space. This is for your mind, not your body. Just take each day as it unfolds after you open your eyes in the morning.

Incidentally, I cooked evening meal every day of treatment no matter how bad I felt. The planning, prep and process takes your mind off how bad you might be feeling.

wise advice. I will try this and report back in a couple of days.

 

[LinaLee]

@Seat0B yes all as @prozac said. My experience has been a while. But I recall the ups and downs. That control over your body is not there and never was. Just have to trust the process and the meds. Thousands of clinical hours and trials have gone into that. You’ve got this you sound very strong.

I tried many ways of getting water in. Eventually settled for mildly diluted Japanese green tea. Just try various flavors. Something will work. I also hated salt during treatment when I’m a savoury person. It was smoky bbq sauce on almost everything . A chance to experiment.

Definitely the routine helps and sticking to it, not focus on the immediate effects. Have a bit far seeing view in this case. A counterintuitive of living in the moment philosophy is really something you need. Some distraction. Treat yourself gently, take the moment to feel “coughty” then move on to the next reward after each dose. I had a program if getting through the program down to the days of feeling terrible. Then pick my self up n went back to work. Luckily I actually did not encounter any of the complications of infections.

But chemo first dose did cause me to end up in the ED unable to breath, possibly a blood clot in the lungs but ct scan was clear but ecg was showing a RBBB. Oncologist says it’s common in 5% of people and nothing to see. My brother being an anesthetist was not happy so pushed me through GP to get an EchoCardiogram. Presto. They found a 10cents hole in my heart n two much smaller ones. I had ASD apparently my whole life. That’s now repaired after chemo. Did explain why I was always feeling breathless n lightheaded during chemo. So small blessing if you can put it that way

 

[prozac]

I had a pet scan last week, a little earlier than usual to the end of chemo because of the other expected treatments. I received an excited response by email from the specialist on Thursday and again Friday and then a consultation with her today. Anything above 6cms is considered large for a mediastinum located DLBCL (non-Hodgkins lymphoma). Mine started at 11.2cm and so the specialist was very pleased to tell me not only has the cancer gone, but the mass is also completely gone. It is the very best of Deauville 1 scale with complete response (CR). They were anticipating there would be at least some residual mass but there is nothing remaining. As a result I will also not need any radiotherapy. The protocol has changed and a year ago I would have still had radiotherapy, but studies indicate no additional benefit so now with no residual mass I don't need it.

I start treatment for Follicular cancer in a few weeks time. This is a low grade lymphoma and situated in my neck chest and groin. It is a one drug treatment, Rituximab by infusion every 2 months for 2 years. No expected side effects.

I've been getting hot flushes which come on without warning. Just my head which breaks out into beads of sweat for maybe 10 minutes after which it can be quite cold. @Pushka ,Turns out is steroi_ withdrawal, bloody prednisone again. Some days I still get aching glute and quad muscles, especially when trying to stand up. Again residual pred. There is a very small chance the hot flushes will be permanent, but not likely, so I just have to put up with the withdrawals for a while longer. Apparently JFK suffered permanently from something similar called Andersens disease!

To say I am delighted is an understatement.

 

[Quickstatus]

Mine started at 11.2cm and so the specialist was very pleased to tell me not only has the cancer gone, but the mass is also completely gone

Wow thats an impressive response to the Chemo

@prozac much congratulations and thank you for allowing us to come along for the journey. Bit of way to go yet but the follicular is by comparison like a pesky and troublesome qantas flight credit

 

[Quickstatus]

hot flushes

Keep a food diary, sometimes certain foods might be implicated.

 

[prozac]

Wow thats an impressive response to the Chemo

@prozac much congratulations and thank you for allowing us to come along for the journey. Bit of way to go yet but the follicular is by comparison like a pesky and troublesome qantas flight credit

Like being on-hold to Qantas call centre.

 

[Pushka]

I had a pet scan last week, a little earlier than usual to the end of chemo because of the other expected treatments. I received an excited response by email from the specialist on Thursday and again Friday and then a consultation with her today. Anything above 6cms is considered large for a mediastinum located DLBCL (non-Hodgkins lymphoma). Mine started at 11.2cm and so the specialist was very pleased to tell me not only has the cancer gone, but the mass is also completely gone. It is the very best of Deauville 1 scale with complete response (CR). They were anticipating there would be at least some residual mass but there is nothing remaining. As a result I will also not need any radiotherapy. The protocol has changed and a year ago I would have still had radiotherapy, but studies indicate no additional benefit so now with no residual mass I don't need it.

I start treatment for Follicular cancer in a few weeks time. This is a low grade lymphoma and situated in my neck chest and groin. It is a one drug treatment, Rituximab by infusion every 2 months for 2 years. No expected side effects.

I've been getting hot flushes which come on without warning. Just my head which breaks out into beads of sweat for maybe 10 minutes after which it can be quite cold. @Pushka ,Turns out is steroi_ withdrawal, bloody prednisone again. Some days I still get aching glute and quad muscles, especially when trying to stand up. Again residual pred. There is a very small chance the hot flushes will be permanent, but not likely, so I just have to put up with the withdrawals for a while longer. Apparently it is something JFK suffered from!

To say I am delighted is an understatement.

Well I’m struggling to wean from it now. Got to 5mg after 9 months. Yeah. Dropped to 4 mg a month ago and upper arm pain settled in almost immediately which I could manage. Had inflammatory markers blood test done last week and didn’t hear from specialist so went down to 3. Hmmm. Pains maybe more intense. Then this morning woke up and left arm basically non functional again. Had to take 5mg this morning. And like last time - arm so much better this afternoon.

 

[CaptainCurtis]

I had a pet scan last week, a little earlier than usual to the end of chemo because of the other expected treatments. I received an excited response by email from the specialist on Thursday and again Friday and then a consultation with her today. Anything above 6cms is considered large for a mediastinum located DLBCL (non-Hodgkins lymphoma). Mine started at 11.2cm and so the specialist was very pleased to tell me not only has the cancer gone, but the mass is also completely gone. It is the very best of Deauville 1 scale with complete response (CR). They were anticipating there would be at least some residual mass but there is nothing remaining. As a result I will also not need any radiotherapy. The protocol has changed and a year ago I would have still had radiotherapy, but studies indicate no additional benefit so now with no residual mass I don't need it.

I start treatment for Follicular cancer in a few weeks time. This is a low grade lymphoma and situated in my neck chest and groin. It is a one drug treatment, Rituximab by infusion every 2 months for 2 years. No expected side effects.

I've been getting hot flushes which come on without warning. Just my head which breaks out into beads of sweat for maybe 10 minutes after which it can be quite cold. @Pushka ,Turns out is steroi_ withdrawal, bloody prednisone again. Some days I still get aching glute and quad muscles, especially when trying to stand up. Again residual pred. There is a very small chance the hot flushes will be permanent, but not likely, so I just have to put up with the withdrawals for a while longer. Apparently it is something JFK suffered from!

To say I am delighted is an understatement.

Fantastic news!

 

[prozac]

Well I’m struggling to wean from it now. Got to 5mg after 9 months. Yeah. Dropped to 4 mg a month ago and upper arm pain settled in almost immediately which I could manage. Had inflammatory markers blood test done last week and didn’t hear from specialist so went down to 3. Hmmm. Pains maybe more intense. Then this morning woke up and left arm basically non functional again. Had to take 5mg this morning. And like last time - arm so much better this afternoon.

I keep getting asked if I have/had any arm pain. Nothing at all, mainly glutes and some days pain in the quads and inside knees.