General Medical issues thread

[LinaLee]

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.

Amazing news. Am so happy for you

 

[Pushka]

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.

That's also part of what I have. I couldn't use my right leg at all. Had to put it into place Thankfully no involvement of the legs currently.

 

[Quickstatus]

mainly glutes and some days pain in the quads and inside knees

That's also part of what I have. I couldn't use my right leg at all

Corticosteroid induced myopathy???

 

[Pushka]

Corticosteroid induced myopathy???

I’ve got PMR.

 

[Quickstatus]

I’ve got PMR.

I know but steroi_ can induce myopathy

 

[Pushka]

I know but steroi_ can induce myopathy

And they also are the only treatment for PMR so So I've googled that. The issue restarted while I was tapering from a relatively low dose of 5mg. Was fine at the higher levels [>10] for around five months. Then 9 8 7 6 5 over the next few months. It was when I hit 4 that it started. I don't have weakness. I have (had) extreme pain when attempting to use the muscle group of upper arm. Legs are fine.

 

[andye]

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.

That's fabulous news @prozac

 

[prozac]

That's fabulous news @prozac

Thanks Andye. It's pretty amazing. I think the nighty scotch made the difference.

 

[VPS]

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.

Excellent news

 

[Flyfrequently]

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.

Great news and thanks for sharing @prozac , maybe you and MrsP can have a think beyond Armchair Travel sometime soon

 

[prozac]

Great news and thanks for sharing @prozac , maybe you and MrsP can have a think beyond Armchair Travel sometime soon

Thank you @Flyfrequently
A clear 5 yrs is considered remission, but evidence shows if it is going to return it is likely to be within the first 2 years, so making tentative plans to fly. I don't think I would want to be dragging myself around some foreign country just yet but hopefully I will be feeling well enough next year.

 

[Pushka]

Thank you @Flyfrequently
A clear 5 yrs is considered remission, but evidence shows if it is going to return it is likely to be within the first 2 years, so making tentative plans to fly. I don't think I would want to be dragging myself around some foreign country just yet but hopefully I will be feeling well enough next year.

Yes. In our case it was 6 months for a good sign as the cancer involved was very aggressive. Then 2 years. Then 5 years. But the thought never really goes away. 40+ years later.

 

[prozac]

Yes. In our case it was 6 months for a good sign as the cancer involved was very aggressive. Then 2 years. Then 5 years. But the thought never really goes away. 40+ years later.

I have no doubt it will not return, just as I believed from the start it would be gone by the end of treatment. I believed in the science. I never expected the mass would completely disappear so this was a big surprise. Many patients can be left quite large amounts of mass remaining after treatment.

 

[MARTINE]

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.

I am so happy for you @prozac - great news
…and for all the fellow AFFers living with these confronting challenges … I don’t know you but I do wish you the very best and you are in my thoughts (for what its worth).

 

[ellen10]

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.

Great news @prozac! Thank you for sharing your journey, I wish you all the best.

 

[Seat0B]

To say I am delighted is an understatement.

Congratulations on this fabulous news.

 

[Seat0B]

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.

my mum has PMR and has been struggling with exactly this issue for a couple of years. Given her advanced age, I don't really know why they keep trying to wean her off it. I understand that long term steroi_ use is not good for you but for heaven's sake she is 89 years old.

 

[Pushka]

my mum has PMR and has been struggling with exactly this issue for a couple of years. Given her advanced age, I don't really know why they keep trying to wean her off it. I understand that long term steroi_ use is not good for you but for heaven's sake she is 89 years old.

Gosh I agree. Unless they are concerned about bone fracture. But really surely it's better to have a pain free life than try to mitigate something that may never happen. I'd rather be pain free for 6 years than worry about a fracture when I was 95.

 

[mrsterryn]

Mum had a Lewy bodies dementia and it impacted her quite severely. She was violent etc .
They finally prescribed Risperidone for her with the proviso it was only for 12 weeks .
Mum's improvement was noticeable. Still had significant aggression but she was more aware of things . It was a massive issue to have my mother who was in her eighties, already struggling with dementia , already in a nursing home and had been in the locked down ward , continue on this medication. Fortunately after a few months mum's dosage just continued.

 

[Seat0B]

Gosh I agree. Unless they are concerned about bone fracture. But really surely it's better to have a pain free life than try to mitigate something that may never happen. I'd rather be pain free for 6 years than worry about a fracture when I was 95.

I totally agree. Honestly, she may not even live for another 6 years and she is very, very miserable when the PMR is not under control. I get it if the patient had a long time ahead of them, but really, at her age, tomorrow is not even guaranteed.