Monday, February 19, 2018

2018

1/14 - M-spike 0.2. Got pneumonia and was in hospital for 6 days
2/14 - M-spike 0.2
3/14 - M-spike 0.3, weight 215 and holding
4/14 - M-spike 0.3
5/14 - M-spike 0.3, diagnosed with diabetes.  ha1c - 10.4 (equivalent to about 255 daily glucose), begin on Metformin
6/14 - M-spike 0.3

Thursday, February 18, 2016

2017 - begin year 14

01/27 - M-spike: 0.3; have lost 12lbs; stopped zometa 02/16/26. Could have dental work done now

02/14 - M-spike: 0.3; still hanging at 12lbs lost 

03/14 - M-spike: 0.4

04/14 - M-spike: 0.4, changed from Percocet to morphine sulphate + oxycontin for break through pain, pain is much better controlled and sleep us much better

05/14 - M-spike: 0.3

06/14 - M-spike: 0.3

07/14 - M-spike: 0.3

08/14 - M-spike: 0.3. Have lost 25lbs. Weight at 220

09/14 - M-spike: 0.3

2016 - BEGINS YEAR 13 OF Chemotherapy

1/19 - M-Spike: 0.2, no other changes.
2/16 - M-Spike: 0.3, going to try Cholestyramine powder twice per day to see if it helps with diarrhea. Also, Angela recommended changing from Warfarin to Zaralto.  Test data indicates it is a better drug.  It is a pill and works like Lovenox with no blood testing required.  I asked if it is affective against PE (pulmonary embolism) and they are checking the data, but believe it is. Zometa today
3/15 -M-spike: 0.3, Cholestyramine is controlling diarrhea. Began Xaralto as a replacement for warfarin
4/12 - M-spike: 0.2 Cholestyramine working best when used once per day
5/10 -M-spike: 0.2
6/7 - M-spike: 0.2
7/5 - M-spike: 0.2  Started me on Cymbalta again to see if it helps the nueropathy
8/5 - M-spike: 0.2  Cymbalta is helping. Pain in feet is slightly better and swelling in ankles has improved
8/30 - M-spike: 0.2
9/27 - M-spike: 0.3
10/25 - M-spike: 0.3 - lots of difficulty sleeping for some reason.  worse than normal
11/22 - M-spike: 0.3; reduced Dex to 20 mg weekly
12/20 - M-spike: 0.3; began losing weight right after reducing Dex

Saturday, March 7, 2015

2015

1/31/15 - m-spike 1.4
2/17/15 - m-spike 1.5 to start study
  • began SAR650984 study. 
  • Includes 40mg dex and 25mg revlimid. 
  • Had a pretty serious reaction during infusion. 
    • Throat tightened (hard to swallow)
    • head stopped up, and chest tightness
    • Stopped treatment for an hour but then restarted and everything was fine. 
  • Zometa treatment 
2/24/15 - treatment, noticed immediately less pain in feet and knees, result of taking dex again. 
3/03/15 - treatment 
3/10/15 - treatment 
3/17/15 - m-spike 1.0 after 1 month of treatment 
4/17/15 - m-spike 0.7 after 2 months of treatment 
5/17/15 - m-spike 0.6 after 3 months of treatment 
5/14/15 - 5/18/15 admitted to hospital with pneumonia and para influenza
6/17/15 - m-spike 0.6 after 4 months of treatment
  • Zometa treatment 
7/17/15 - m-spike 0.6 again
8/17/15 - m-spike 0.4 !!   
9/01/15 - m-spike 0.5  

  • Zometa treatment
10/01/15 - m-spike 0.3
11/01/15 - m-spike 0.3
11/24/15 - m-spike 0.3 
  • Zometa treatment
  • SAR650984 is given a name: Isatuximab.
  • daratumumab (Darzalex) approved by FDA (close to Isatuximab)
  • Ixazomib (Ninlaro) (next gen of velcade, carfilzamib, but in pill form) approved by FDA
  • Elotuzumab (Empliciti) approved by FDA
12/22/15 - m-spike 0.2


Friday, May 23, 2014

2014 -

H1/7/14 M-spike .4
1/14. Contemplating LTD due to ineffectiveness at work. 
1/21/14 m-spike .3

2/4/14 Zometa. M-spike 0.4

2/18/14 My m-spike is 0.4 again.  that’s 4 times in a row over 2 months that it has been either 0.3 or 0.4.  Doctor says that we should just continue to watch and be optimistic, but at same time they indicated that the treatment may be coming to an end.  If it goes to 0.5 for a few in a row, then according to the study, they boot me off.  Nothing to worry about, I may be on this for quite a while yet.  Also, I have to be very thankful that I’ve been on this almost 5 years, which is unheard of.  Also, there are lots of new study’s available along with FDA approved treatments that I haven’t tried yet.

Spoke again to nurse about LTD. They will support me. It's really a decision between me and my insurance company. 

3/4/14 - M-spike .4
3/18/14 - M-spike .4
4/1/14 - M-spike .4
4/15/14 - M-spike .5
4/29/14 - M-spike .4, Zometa, anti-biotic for pilonital cyst
5/13/14 - M-spike .4
5/27/14 M-spike .4
6/10 /14 M-spike .3
7/7/14 - cycle 66
7/21/14 - Zometa
8/12/14 - M-spike .4, ultrasound test on legs to check for clots because of swelling. No new clots found. 
8/26/14 - M-spike .5
9/9/14 - M-spike .5, must leave study. New study will be SAR650984 (similar to daratumumab) after washout  period. M-spike must be >=1.0. No chemo beginning 9/9/14
10/7/14 - M-spike .9 Feeling better, sleeping better, feet not any better. Swelling in feet/ankles may be improving. 
Laparoscopic hernia repair scheduled for 11/5. Began taking water pills and potassium to reduce swelling in ankles 
10/20/14 - began wearing compression socks. This works wonders to reduce swelling in ankles 
11/4/14 - Zometa. Not taking Xanax at night. Down to 3-4 Percocet daily. M-Spike: .9
11/5/14 - laparoscopic hernia surgery. Expected 4 holes to do repair. Required 14 holes. Back to work 11/11/14
12/2/14 - M-Spike: 1.1 Eligible for another study


Sunday, June 16, 2013

2013 -


1/1/13 – M-spike 0.0

2/1/13 – M-spike 0.0, neuropathy has leveled out

3/1/13 – M-spike 0.0 

4/1/13 – M-spike 0.0  Diagnosed as Diabetic.  HA1C 7.6, glucose 119, Triglycerides 250, HDL , LDL , total cholesterol 226

5/1/13 – M-spike 0.0

6/1/13 - M-spike 0.0

6/15/13 - HA1C 6.6, glucose, triglycerides 336, HDL , LDL , total cholesterol 287
I don't understand why triglycerides and cholesterol could rise during my strict diet??  At least HA1C decreased. Weight down about 20lbs.  Lipitor 10mg now being prescribed. 

7/1 - M-spike 0.0. Weight: 231

7/15 - began decreasing Percocet from averaging 5 pills per day down to 2 pills most days. It wasn't too hard.   Tried GasX to relieve terrible gas problem but only gave me cramps. May try Beano next

8/1 - M-spike 0.0 weight 232
         Down to 2 percocets daily

9/24 - rash appeared. Took Benedryl. Gone in 2 days

10/1 - M- spike 0.0. Weight 233
          Flu shot

11/1 HA1C 6.5, glucose 119, triglycerides ??, HDL ??, LDL ??, total cholesterol 193
Lipitor is working 

11/13 M- spike 0.0, zometa 

12/13 1st half of month M-spike .4
12/13 2nd half of month M-spike .3
12/30/13 colonoscopy 3 small polyps. All good. Last one was 12 yrs before. Dr. Thyssen both times. 










2012 -



1/1/12 - M-spike 0.0

2/1/12 - M-spike 0.0  Added Cymbalta to Gabapentin for Nuerapathy

3/1/12 - M-spike 0.0

4/1/12 - M-spike 0.0

5/1/12 - M-spike 0.0

6/1/12 - M-spike 0.0  Stopped Cymbalta and changed to Lyrica (stopped Gabapentin)

7/1/12 - M-spike 0.0  Changed from Ambien to Restoril

8/1/12 - M-spike 0.0  Increased Restoril dosage to 30mg

9/1/12 – M-spike 0.0 Stopped Restoril and back to Ambien

10/1/12 – M-spike 0.0  Stopped Lyrica and back to Gabapentin

11/1/12 – M-spike 0.0

12/1/12 – M-spike 0.0