Friday, May 31, 2013

FINALLY......good news

Humber River Hospital
Our day started with blood work first then meeting with Doctor P.
All good news from her.  Hemoglobin is up 20 points and his IGG numbers looking good too!  The M Protein number takes longer to get from blood work, but she was happy with what came in already.  It meant that the M Protein is going lower, which tells us the new chemo drug is working.
So, this drug (Revlimid)  is supposed to shrink the tumour in his lymph node in the stomach area.  In August, they will do a CT Scan to check the size and if all goes well, he will qualify for the stem cell transplant.  That will take us into September.....

Princess Margaret Hospital
He has done 5 radiation treatments.  No side effects yet.
I went upstairs to hematology to see if they would give me Tony's results on the spinal tap test.  I saw the doctor that actually did the test and she told me that everything came back negative!  WooHoo

How's Tony feeling?
The steroids are in full force for 4 days, then off for 4.
His hands are shaking.
Legs feel weak and tired.  Not sure if it's from the new chemo or if he's been more active and therefore, legs are sore.  Time will tell, but after 8 days, he does feel better.
Spirits are good.

All good news.
Life is great again.
I'm feeling the hope.


Thursday, May 23, 2013

Well, back to square one!

Never thought I'd be typing this soooo soon!

The latest results
M-Protein number:  In October 2012 when diagnosed it was 57.  It got down to 14 in February.  The latest count was 44. (should be zero)

Hemoglobin:  In October 2012 it was 67.  It got up to around 114.  Today it was 77.

CT Scan: Head was clean of plasmacytoma (tumors).  The chest area showed a lymph node of 5cm.  Considered large by the Doctors.

The Plan
1.  Basically the current chemo treatment stopped being effective.  They have removed the Velcade needle and are replacing it with Revlimed.  Pills every day.  We were told that this is a very old drug used to reduce nausea with pregnant women.  They have found out that this particular drug is very effective for myeloma patients.  Also, the Dexamethazone (steroid) is back but more often.  He's to take it 4 days on 4 days off.  Basically, they are giving him a higher dosage now to give it more effect.  Cramping is another symptom, so hydration is important.  They recommended tonic water.  This will go on for a further 4 months till they even consider a stem cell transplant.  Also, provided his numbers go in the right direction and is tumor free.
2.  Princess Margaret Hospital needed to rule out a tumor in the brain.  Even though a CT Scan was done and showed negative, they needed to extract fluid from the brain to test.  They did this by drawing fluid from the spine.  (4 vials of fluid).  He was very brave today.  And, me, I survived this procedure too!  I stayed in the room.
3.  To get the hemoglobin increased, they are doing a blood transfusion tomorrow at Humber River.  Probably two units.  They also prescribed Eprex, which helps stimulate the hemoglobin. This is the needle once a week that I had a tough time doing.
4.  Radiation is necessary for the scrotum area to rule out any possible "leftovers" from surgery.  He will be having 10 treatments once a day for 10 minutes each time.
5.  As for the lymph node, it should shrink with the chemo pills he is taking.  They will follow up with a CT scan in about 2-3 months to see the size.

Final Thoughts
This explains many things.  He's been so tired lately and very lethargic. Anyone with a Hemoglobin count of under 100 will feel their energy level low.  So, no wonder!  Poor Tony.  He was so brave and positive today.  On a funny note, when the Doctor at Princess Margaret came in, she said that his medical situation has taken over her Inbox with emails back and forth with his oncologist and urologist and every one else connected with him.  Too funny. My special man.
Thanks to everyone for your text messages and phones calls and emails of prayers and concerns.
We know we are truly blessed with family and friends.

Thursday, May 9, 2013

This is beginning to feel like it's dragging on...

I'm beginning to feel frustrated with all this.  Can only imagine Tony's feelings with all the poking and proding everyone is doing.
Not a good day today.
As mentioned last week, he continues to be very tired, lethargic, no energy and doesn't want to go in to work.  That alone, is not Tony.  Doesn't want to go to work?????  What's up with that?
The saving grace is that Robert, Michael, Joseph, Dale and all the employees at the back are all going above and beyond to help with work.  Tony knows that they are all stressed daily.
His hemoglobin dropped again this week.  It's at 91. She didn't have the M-protein count as it takes longer for those results. His night sweats continue while he sleeps.  I wake him up during the night and take his temperature.  Still low grade fever.  Not enough to worry about.
Doctor P thinks that the chemo is not working.  Perhaps may have to change up the recipe.  PMH has scheduled the CT scan for May 16th on his torso and head. We shall see what those results tell us.  We are to take a CD of the scan and bring to PMH afterwards for consultation.   If they find more plasmacytoma, he will be going through radiation treatment to remove it.  Once this settles, then and only then, will they consider the Stem Cell Transplant.
I'm tired of writing this.
I'm tired of these one step forward and two steps back days.

Friday, May 3, 2013

Not sure how I feel about the latest news

Wednesday we had a follow up with the urologist, Dr. S.  She squeezed us in between her surgeries.  That morning, Tony didn't look well.  Very lethargic, clamy, heavy breathing and just plain tired.  While waiting for the Dr. he had about 4 cups of water, kept falling asleep in the chair and had those feverish eyes.  I was worried, but grateful for the timing of his appointment.  I went to get him a Gatorade with hopes of getting some energy in him.  He drank it quickly.  I guess with his low grade fevers and clamy nights, he must have been dehydrated.  I thought he was drinking enough, but obviously not.  Dr. S. felt the wound and area looked less swollen.  Good news.  No need for further draining. (didn't know that was a possibility)
The biopsy on the drained blood from last week showed no infection and no signs of further myeloma growth. WHEW!  She says he can go to work starting slow.  A couple of hours a day.
As we walked out at 3:45, Tony had a great idea.  Let's go to oncology and get the blood work done so we didn't have to go in for 8am the next day.  (they close at 4:00) Cutting it close!  So off we go, and sure enough the nurses were all casual with no patients around.  When they saw Tony they all had concern for him.
How are things down there?
How you recovering?
How's the swelling?
You never should have gone to work so early!  Silly man!
We heard, blah blah blah.
He was in his glory.   He sat in the big chair and they registered him and took blood.  They noticed he had a laboured breathing thing happening.  They noticed he looked tired.  Oh, all the fuss!  It was great watching my husband enjoy the attention of these ladies we've come to know over the past 5 months every week.  The doctor overheard and came in the room and started asking all those appropriate questions.  Good questions.  She asked the nurses to take his vital signs.  Blood pressure a bit high.  We discussed the low grade fevers and sweaty nights.  Not a concern yet, but monitor.
So off we go.  But first, we needed to detour to Dolcini, by Joseph.  We needed a tray of fresh baked goodies for the entire oncology staff at Humber River Hospital.  They really didn't have to see us, but they did.  Joseph said to come by on our way in Thursday morning.  He'd make sure to have a fresh batch for them.
Thursday Chemo Day
We went to Dolcini's first.  LOVELY tray of baked goodies.  When we got to Humber, we gave the goodies to the ladies and they all were grateful.  Love those girls!
Dr. P in oncology re-confirmed the biospsy results.  His hemogloben has been coming down.  95.  But that could be from the surgery and internal bleeding.  Normal is over 130 (I think).  Transfusion was at 67 back in October.  So, he's still ok, I guess.  In March it had reached 117 :(
His M Protein number keeps rising.  This is not good.  Should be zero. Presurgery, two weeks ago, it was at 26 and yesterday it was at 33.... what's going on with that?  Dr. P is not too concerned as he has missed about 3 chemo treatments in 2 months.  When he was diagnosed, that number was 57.
She gave us a prescription for antibiotics in case his fever goes above 38.0.  She has enforced to Tony to LISTEN to me and to go by my judgement.  If it's over 38.0 for over two days in a row, we are to go to emergency for IV antibiotics.  She's not sure why this low grade fever happening.  Could be the myeloma in his bones causing the low grade fever.
Dr. P. submitted all his test results to Princess Margaret. They requested a CAT scan of his body.  I'm thinking they want to rule out any further myeloma areas that might be increasing his M protein number.  Even though he missed a couple of chemo treatments, perhaps something else is brewing.  Just ruling out the possibilities, I guess.
Day one of Dex (steroids) so his energy continues to get better as the day goes on.  He decides to go into work for a couple of hours.  But, a couple of hours turned into 5 hours.  Stubborn man!  He was clamy and had a funny white/yellow colour.  Weird.  Can't describe.  He just wasn't himself.
This morning as I type, he is much better!  No low grade fever over night.  His energy is much greater.  Hard to tell him to slow down.  This Dex stuff is powerful.  High energy.  Lots of things to do today.  He has his mental list and continues to remind me of all the "to do" things that need to be done.
I'm laid back, purposely taking my time.  The later we leave, the less hours at the office this afternoon.
He's back!