General Medical issues thread

[Milboo]

If you’re interested in gut health @Katie then look at making your own kefir. Awesome for gut health. I even use it for my dog - mixed with blue spirulina, raw honey and colostrum!

Well sadly the cortisone injection in my shoulder has not been as effective as hoped. Still having issues

 

[Pushka]

If you’re interested in gut health @Katie then look at making your own kefir. Awesome for gut health. I even use it for my dog - mixed with blue spiraling, raw honey and colostrum!

Well sadly the cortisone injection in my shoulder has not been as effective as hoped. Still having issues

Sometimes it’s the second one that does the trick. Shoulders are very difficult things though.

 

[coriander]

Woken from deep sleep with acute spasm of back pain this morning at 3:20. Something crumbled.... again. Now pain levels up again.
B****r! I won't be able to walk to the 'G let alone sit for 3 hours on hard seats.
I was SO looking forward to my first footy match of the year.
I was 6'1" a year ago, now less than 5'10".

 

[JohnM]

Sorry, still waiting for hugs to reappear on my phone.

 

[coriander]

It's been about a month since I posted and I thought I'd provide a bit of an update. Let me know if this is too much sharing (I'm mindful of the "moving away from original function" thread of posters not liking threads such as this). However I feel a sense of warmth, support, welcome and community in this forum I don't experience in my other wanderings on the web.

I've been home now for a month. My pain levels vary from "minimal pain (but always there)" to "I'll stay in bed all day today". Which is a bit of a nuisance as I'm otherwise quite well, though I tire easily - 5,000 steps and I'm exhausted. I can't remember what it is like to be pain-free.

My current cycle of weekly IV and SQ chemo continues till mid-May: I'm amazed that so far I've had very little reaction to my chemo. My best friend picks me up each week after chemo and we head for a great little Vietnamese restaurant in Bay Street for a good meal. He's a total rock.

My blood test results also are looking good supporting my general feeling of wellness: NO changes to red or white cell count, liver and kidney function tests all have been normal, cancer-specific proteins fell to normal early on in the piece.

One of the consequences of weight loss is that my fingers are thin......... somewhere in Melbourne last week my wedding ring quietly slipped off and is now lost - a metaphor for the state of my marriage I guess.

On the bright side, it looks like I'll be approved for a stem cell transplant: full triage and pre-transplant work up starts in a couple of weeks. The specialist explained that this is likely to prolong my quality and quantity of life from 18 months to 5+ years. I asked about the CAR-T therapy that's been in the news lately: he's actually involved with the research into CAR-T and while it's not currently used / approved for multiple myeloma (it's looking good for leukaemia), he's optimistic it might be available in 5 years or so (and was quite blunt that my stem cell therapy was designed to keep me alive till something else comes along).

The stem cell transplant therapy is quite involved and will cause me to be very ill (not to mention the 3% mortality rate). Basically they ramp up the chemo (complete with side effects) then wait for a bone marrow response. Stem (plasma) cells are then harvested from my circulating blood and frozen. Very high doses of chemo are then instituted to completely destroy all my bone marrow, sending my white cell count and platelets down to zero. Diarrhoea, intestinal bleeding, mouth ulcers, general debility and weakness a certainty. My stored plasma cells are then returned to me and my bone marrow should regenerate within 10-12 days with a recuperation period of 2-3 months. (The absence of white blood cells and platelets will mean I have to be hospitalised while the bone marrow reboots as I'll have no protection against infection or haemorrhage.)

My youngest son is also at home job hunting and recuperating from elbow surgery so is my driver when I need to head for the supermarket or go to work to do the pays etc. I try to get to work weekly to at least feel like I'm still a part of the practice. My wife is currently looking for an apartment to purchase, inviting me to come along to the inspections.

Scared? Absolutely. In fact, I start to tremble even just reading back the paragraph above.

However, I'm generally a glass-half full person so I'm optimistic that with the right care and support I'll get through this next challenge. I keep looking at travel options in 2020 to give me something to aim for and accomplish.

Thanks for the hugs and likes - so simple to click, but it lifts my spirits enormously to know people actually care (sorry, my words don't convey my feelings adequately). I'll really need them in June-July.

 

[mrs.dr.ron]

Geez coriander I hope you get a zillion hugs !!

 

[suze2000]

Yeah that's a tough road ahead. Don't let anyone near you who hasn't washed their hands.

 

[love_the_life]

I want my hug back!
It sounds a lot more promising that your earlier posts and hopefully the transplant will kick in and at least help on the pain front.
Good to hear you are managing to get into your practice a bit.
Thinking of you.

 

[Pushka]

I want my hug back!
It sounds a lot more promising that your earlier posts and hopefully the transplant will kick in and at least help on the pain front.
Good to hear you are managing to get into your practice a bit.
Thinking of you.

Clear your cache!

Settings. Safari. Clear history

 

[pagingjoan]

That's a tough package, Coriander.
Wishing you every possible win along the way.

 

[suze2000]

Okay I have the hug back, but I wonder how many sites I'm going to have to re-log into (and how many passwords I'll have to reset!)

 

[coriander]

Hopefully the transplant will kick in and at least help on the pain front.

The ongoing pain comes from the three fractured vertebrae (T12, L2,L3) which appear to be collapsing (haven't had an MRI for couple of months -it's an outpatient cost not included in any hospital stays) as the myeloma cored out the vertebrae (successful chemo means that there is nothing inside those vertebrae). I've not had any pain in my ribs since mid January.

I had a sobering consultation with a locum haematologist a couple of weeks ago who was old-school and didn't believe in sugar coating my condition. I was quizzing him and he sharply remarked "five years ago you'd have been dead in 3 months!". That shut me up in shock.
My normal haematologist later said that, in his own way, he meant to be encouraging in that I was doing well or better than expected. A bit of tough love.

I find the biggest battle is inside my head - the emotional challenges are much greater than my physical challenges. (As an aside, so far out-of-pocket expenses have exceeded $15k - I can see why one side of politics is promising financial support for cancer patients.)

 

[Pushka]

Okay I have the hug back, but I wonder how many sites I'm going to have to re-log into (and how many passwords I'll have to reset!)

All of them unfortunately.

 

[suze2000]

(As an aside, so far out-of-pocket expenses have exceeded $15k - I can see why one side of politics is promising financial support for cancer patients.)

Have you considered switching to a public hospital? Or asking for a referral to one for the BMT?

 

[love_the_life]

The ongoing pain comes from the three fractured vertebrae (T12, L2,L3) which appear to be collapsing (haven't had an MRI for couple of months -it's an outpatient cost not included in any hospital stays) as the myeloma cored out the vertebrae (successful chemo means that there is nothing inside those vertebrae). I've not had any pain in my ribs since mid January.

I had a sobering consultation with a locum haematologist a couple of weeks ago who was old-school and didn't believe in sugar coating my condition. I was quizzing him and he sharply remarked "five years ago you'd have been dead in 3 months!". That shut me up in shock.
My normal haematologist later said that, in his own way, he meant to be encouraging in that I was doing well or better than expected. A bit of tough love.

I find the biggest battle is inside my head - the emotional challenges are much greater than my physical challenges. (As an aside, so far out-of-pocket expenses have exceeded $15k - I can see why one side of politics is promising financial support for cancer patients.)

So does the pain mean that the chemo is doing its job? Good to hear the rib pain has gone, but it must be so debilitating to be in constant pain.
To say keep positive sounds trite but ...

 

[Denali]

The ongoing pain comes from the three fractured vertebrae (T12, L2,L3) which appear to be collapsing (haven't had an MRI for couple of months -it's an outpatient cost not included in any hospital stays) as the myeloma cored out the vertebrae (successful chemo means that there is nothing inside those vertebrae). I've not had any pain in my ribs since mid January.

I had a sobering consultation with a locum haematologist a couple of weeks ago who was old-school and didn't believe in sugar coating my condition. I was quizzing him and he sharply remarked "five years ago you'd have been dead in 3 months!". That shut me up in shock.
My normal haematologist later said that, in his own way, he meant to be encouraging in that I was doing well or better than expected. A bit of tough love.

I find the biggest battle is inside my head - the emotional challenges are much greater than my physical challenges. (As an aside, so far out-of-pocket expenses have exceeded $15k - I can see why one side of politics is promising financial support for cancer patients.)

Wishing you easier, painfree days ahead and a million hugs.

 

[Pushka]

Constant pain takes an enormous toll on your sense of well being. Amongst everything else you are hanging in there admirably. I hope that posting here helps just a tiny bit to keep you on track a little. Again, my best wishes and thoughts in your journey.

 

[coriander]

Don't get me wrong, I'm not complaining: I'm fortunate to be able to afford the costs. Most importantly the level of care I'm getting is excellent.

Plus I've hit medicare and pharmaceutical safety nets which make a big difference in ongoing spend (though this is one place I wish I didn't earn MR points). Even with top hospital cover, pathology tests done in hospital are charged as outpatient hence not covered by private insurance.

Likewise in-hospital CT Scan is covered by PI but in-hospital MRI is charged as outpatient. Go figure.
BMT iwill be done at Peter Mac as public patient which will minimise out of pocket expenses.

 

[LadyC]

Good luck @coriander , you have a very challenging road ahead.

 

[Pushka]

Don't get me wrong, I'm not complaining: I'm fortunate to be able to afford the costs. Most importantly the level of care I'm getting is excellent.

Plus I've hit medicare and pharmaceutical safety nets which make a big difference in ongoing spend (though this is one place I wish I didn't earn MR points). Even with top hospital cover, pathology tests done in hospital are charged as outpatient hence not covered by private insurance.

Likewise in-hospital CT Scan is covered by PI but in-hospital MRI is charged as outpatient. Go figure.
BMT iwill be done at Peter Mac as public patient which will minimise out of pocket expenses.

I think you are free to unload anything you want to. But yes, we are extremely lucky with our health care in Australia but that doesn’t mean there aren’t little kinks in it that annoy us.