Where Are The Jannies? YooHoo Admin Mods! Wherefore Art Thou?

ozymandible

Who do we have to know to rid us of all this sportsball spam?

LitlCJdoll

Just calm...

Don't worry about it... Its a minor thing.

Did you read my new entry?  I just got my new culture results, and its really really bad news.  This infection has given me Sepsis, twice in the past. Its an Opportunistic infection that strikes people like me who are seriously immunocompromised, and I well remember how hard it is to get rid of. It requires intravenous antibiotics, usually at least 2 different types, depending on what its resistant to.

In June, remember I had a Drug Resistant strain of E. Coli in both my lungs, .  E. Coli comes from the gut. I had somehow aspirated my stomach contents.

 

Well, this Klebsiella Pneumoniae , which I now have  again in my lungs --- it also resides in the intestines and in feces. So how the H is it again in my lungs...??? First E. Coli and  Klebsiellaa just months later.    He said he wants blood work done... Yeah, things will now get interesting..

Actually, in June in the Cancer center hospital, they told me they were sure that I had a Second opportunistic infection, on top of the E. Coli.  Why they thought that was the appearance of my CT scan Chest....  It was extremely abnormal.  Then I had the Bronchoscopy .

Since then my lungs have not been clear, not once. Every doctor and oncology nurse who has listened to my lungs has heard a variety of lung sounds. Never once have they been clear...

I told my mother 2 days ago that my Fatigue level is sky high.  My Oxygen Saturation is really low at times...

Now I know why, .. More pneumonia.  

I posted the sputum culture results on my post, earlier..   

Don't fret over Insignificant things like this hacking/ spam problem. It will be fixed.  Doesn't concern me...

Little crystal.  Trying to fight back with only 71 pounds of force/ impact.  .........

Russell8

Yes your entries are read.

Yes your entries are read. Reading about your loss and trials I find it difficult to find what to say in reply. Maybe others are the same. 

I am at the start of my  journey with cancer with diagnosis, surgery and oncology treatment this year.  I told my surgeon that after  months of trying to get treatment  after my diagnosis then months MD appointments, tests and procedures and just now having the first few  weeks without one the reality of having cancer has become real to me.  There I go talking about me.

Continue to post as you do. Know you are heard.

LitlCJdoll

I worry about you

Dear Russell,

Yes indeed, I have been reading of your challenges, in just now getting started in treatment. Please know I'm thinking about you... My initial diagnosis too was delayed because oral surgeon, dentist, and a long time doctor failed to pick up on what was going on. Then the final one that blew my mind was the doctor who refused to biopsy a large lump, and in his confidence ( and arragance) at the time made a huge mistake.... By the time I got to my ENT surgeon for biopsy, it had grown Hugely.  That primary tumor was 6.3 Centimeters long, on day of Surgery. Actual tumor size.

The doctor who refused to biopsy it, later apologized... And I know he learned a hard lesson.

I am getting ready for tomorrow, an all day infusion in the Cancer Center hospital.

Please keep us all posted on everything that's going on as you get started in your Fight.  I feel sure that you are strong and ready to begin!!  We are behind you and we Know how difficult, demanding and unpleasant it all is.  But everyday, you have to get up, and  continue to make more strides Forward in completing the treatments.... There's no alternative.  You have to be very determined, with the goal in mind.

Please take care and keep us posted !

? Crystal

ozymandible

I hope you feel better soon

I hope you feel better soon Crystal.  

ozymandible

What Russell said!  Sometimes

What Russell said!  Sometimes I don't know what to say.  My little struggle seems so insignificant compared to some on here so I don't post much on others threads. Sometimes I'm hanging by a thread so how am I going to lift others up?

wbcgaruss

Well, ozy

Don't think you can't help because you are hanging by a thread yourself.
Sometimes that's when you have the most insight and deepest thoughts.
Hand the end of the thread you're hanging on to someone and help them hang on.
Just as you did today with Russell and Crystal.
A kind word, a little advice, a prayer, letting someone know you are dealing with the same thing and you commiserate with them.
The same goes for anyone on here if you have been thinking of commenting or offering support and think you can't do it think again.
We all have stories and things we lived through and have become stronger and more insightful through them and you have something to share.
So anyone that's been thinking about it jump on in here and help with support and stories and information .

Take Care-God Bless-Russ

 

 

LitlCJdoll

I will be okay..

Oh, dont worry... I will get through.

I just now finished a breathing treatment with the Vest ( I'm now " all shook up!") And simultaneously my 3 nebulizer drugs.  

I am packed for tomorrow in the hospital and its just my regular infusion. 30 Years this year I've been doing these infusions Every single month. For my immunodeficiency... I know exactly how I will feel afterward ... ( ichy and achy, tired), so I just plan for it.  And lots of people know me, so its a friendly place.

Waiting on Dr. Meier to call me..

How is your Occipital pain?  And most importantly what about your thyroid malignancy?  Are they deciding on surgery for it?

Keep us up to date!!

Getting up at 4:30 am tomorrow, so I need to finish up..

Take care,

Crystal

 

ozymandible

Thank you Russ.

Thank you Russ.

ozymandible

I'm still on painkiller 24\7

I'm still on painkiller 24\7 but not as much the last couple of days.  I wondered if it could be from radiation damage but maybe not might just be the arthritis in my neck.

Still haven't heard a thing about PET scan other than waiting on approval from insurance company.  I have some non-germane issues that are pushing cancer to the back burner right now.  I have more immediate problems than thyroid cancer right now I don't even know if I really have it this organization is the same one that said I was housebound so I won't know for sure until I finally get my scan.

wbcgaruss

Well, ozy

I hope you soon get your scan and figure out what is causing this pain.
I figure you went through treatment so cancer should be gone.
If any is there, and I certainly hope not, this is a hypothetical comment ozy it would be so small I don't think it would be causing this.
If any cancer left it would be cellular in size.
I am thinking it could be radiation arthritis effects working together.
A quick way to see the area and I don't think as expensive would be a CT scan with contrast and that would cover the problem area for now and get the PET later after checking the H&N area alone.
Mention this to your docs and see what they think about it and maybe they will get something done quicker for you and insurance may go quicker with approval.
I'm no doc of course and don't know if this is a good idea but it doesn't hurt to ask.
You did so really well going through treatment I am sure this is a problem you will get worked out.
Have you narrowed down exactly when this pain started and in that time frame you may find the connection as to the cause of this problem?
As always ozy-Wishing You The Best-Take Care-God Bless-Russ

ozymandible

It started in early September

It started in early September.  I thought maybe it was from radiation damage but I do have arthritis in my neck so could be either, could be both.  I searched the forum and could only find one other person who had occipital neuralgia IIRC hers was cancer related-radiation.

 I think chemo doc is leaning toward occipital neuralgia and may not feel like it's cancer related.  Could just be stress too.  Lots of non cancer things worrying me to death.  Next time I see chemo doc I'm going to ask for anti anxiety meds I was on about ten years ago because my brain will not shut down even with the handful of pills I take at night for the pain.

It can't be good for me.  The stress.  All the pain pills can't be good for me either.  I need them though or I can't do my exercises to prevent trismus and neck stretches.

Chemo doc is trying to get CT with contrast for that.  They are also trying to get insurance to approve the PET scan.  I'm anxious to find out what the results are but I'm actually more wound up about non cancer things.  For some reason, the cancer thing doesn't upset me nearly as much as it should.

I'm extremely weird like that.

LitlCJdoll

Biopsy??

Isn't a biopsy and subsequent Pathology report required to confirm cancer?? Answer is YES.

A PET scan cannot definitively confirm whether said mass is or isn't cancer. A biopsy is required.

And sometimes even that can be hit or miss, if the mass is large and the surgeon misses a malignant part of it.

Hoping you get a BIOPSY of whatever it is they are looking at.  Its the Only Way to confirm whether it's cancer.

Crystal, who has had 6 malignant tumors, -- I know a little about this subject unfortunately.

Please follow up and push for a biopsy if there is any question about it.

Then again.....I have masses and growrg s in 3 widely different places( 2 in my Spleen, for example), which have been there for years and we just monitor them for changes.  No use in rocking the boat...

Good luck.

ozymandible

This is the outfit that had

This is the outfit that had me in their records as being housebound when I was driving myself to radiation everyday, remember?  I need something a little more concrete than "What are we going to do about your thyroid cancer?"

ozymandible

Crystal I had my FU with

Crystal I had my FU with chemo doc today.  I asked her how they knew I had thyroid cancer and she said it was discovered in the original surgery they did biopsy and path report.  I honestly don't recall hearing about it they must have said something when I was full of pain meds and as you know it's been a hell of a year for me on non cancer issues. (I do believe the stress from such makes the fight much more difficult but not putting that stuff out here!) I just got CT contrast and PET scan scheduled so maybe will have some answers soon.

She did say my outlook was good but I'm not going to celebrate just yet...  But I do feel better about things cancerwise.