Relapsed High Risk Myeloma - Update July 7 2013

"My people" from Colorado packed up and departed Mackay, Idaho this morning for Greeley, Colorado. L to R: Jan Martin, Judy Richter, Judy Malkiewicz, Nancy White, and Walt Richter.

I spent the entire day one-with-the-sofa except for a quick run to Ivies for milk. Jani changed all the beds and did the laundry, mowed the lawn, did the weed eating and had a short nap.

I had really creepy legs today and took plain Tylenol (acetaminophen), which really helped a lot to calm them down. My GI tract is going QUICKLY south again with no reason why. I have not been on any chemo for a week (my off week). Developed a new spontaneous bruise on the inside of my left calf too.

The little filly behind my house was have a great time today --- running circles around her mama mare - just like puppies do sometimes - we call them "lune-spells".

Relapsed High Risk Myeloma - Update June 19 2013

Woke to a much better day as far as I felt compared to yesterday. My gastrointestinal trace seems to have settled down and although not perfect, it will do. My legs, especially my thighs are weak, probably talking to me from my 1 block walk last evening. 

Day 16 of Cycle 2 Bendamustine/Revlimid/Dex.

Was able to drive to the Post Office to pick up the mail and deliver it to my father. Someone stained his front deck and it looks awesome.

Went grocery shopping at Ivies while Jani cleaned and re-organized the garage!

Went to Ladies Aid at 1 PM at the Mackay Women's Club to have the members show me how to trace a pattern on seven t-towels they are going to make for me. I love this group and only a couple of members were absent today.

L to R: Lula Shaffer, Dorothy Schmuck, Virginia Anderson, and Lela Warner, Ladies Aid at Mackay Women's Club, 19 June 2013.

Just before 2 PM, I was driving to the Post Office to mail a package from the Women's Club when I was HIT with a SEVERE episode of what I call "HEART PAIN". I drove directly home (6 blocks) and made it to the sofa where I told Jani "I WAS DYING".  This is the 5th episode of "heart pain" that I've had since my myeloma diagnosis (24 May 2011). At least 2 of the episodes have been witnessed by nurses and doctors at the University of Colorado Hospital in Aurora, Colorado.

1. 19 June 2013 (here Mackay, Idaho)
2. 24 May 2012 (while inpatient at UCH for 2nd autologous stem cell transplant)
3. 18 April 2012 (in Greeley, Colorado at Jani and Robbyn's house)
4. 17 Jan 2012 (here in Mackay, Idaho and Ron took me to Idaho Falls ER)
5. 15 Sept 2011 (while inpatient at UCH for 1st autologous stem cell transplant)

These episodes of "heart pain" are ALL SIMILAR and resemble what I image a heart attack would be like. I have severe pain along a circumference band just below both breasts and radiates up to my right jaw line and teeth. It is terrible pain and takes my breath away. I feel some better if I sit up , but not really. Since I've had 2 of these episodes while hospitalized a the University of Colorado witnessed by the nurses and doctors, I sort of know what to do when it happens. In those episodes, they worked me up heart attack with EKG, heart ultrasound, lung CT Scan, and blood tests and everything was normal. 

Jani gave me:

1. Famiciclovir (shingles prevention which was due at 2 PM)
2. Aspirin 81 mg (holding right now for platelets of 33 but decided best to take now)
3. Pepcid 20 mg
4. 1/4 Percocet
5. AND a BIG DOSE - "stay clam Jude, you are not dying"

The entire episode lasted just about 15 minutes and then I was essentially fine, but TIRED with creepy legs.

I remember reading on the Multiple Myeloma Beacon (http://www.myelomabeacon.com FORUM section about other myeloma patients experiencing similar episodes when taking Revlimid and being treated in emergency rooms, only to be told nothing was wrong with them. Here is the link: http://www.myelomabeacon.com/forum/chest-pain-as-a-side-effect-of-revlimid-or-velcade-t1700.html?hilit=chest%20pain

I liken these "heart pain" episodes to something VERY SIMILAR to the spasms and cramps I get in my legs at times. Terrible spasm pain followed by aching pain followed by "normal" (whatever that is). But with the "heart pain", there seems to be little I an do to "stretch" the pain away. It is SCARY and PAINFUL.

We had rain off and on all day with cooler temperatures in the low 60s. Lots of new snow on Mt. McCaleb above Mackay, Idaho this evening. This is NOT unusual for Mackay and I've got photos of new snow as late at 24 June in 2003. We are expecting freezing temperatures tonight, so Jani lugged all of the porch plant in to the garage tonight.

Pomalidomide (Pomalyst) Update For Relapse After 5 Doses - March 10 2013

Update on side effects of pomalidomide (Pomalyst) after five (5) 4 mg doses. I take the pomalidomide just before bedtime because it makes me almost instantly tired.

• continued scalp burning
• creepy legs with a fullness feeling in left calf (like it is being blown up with bicycle pump)
• neuropathy of left leg rated 4 on 1-10 scale, especially from back of left knee to left hip
• neuropathy of left foot is mild
• poor sleep attributed to neuropathy
• tiredness, especially in afternoons and evenings
• no diarrhea and no constipation

I have been experimenting with small doses of oxy (1/4 tabs) to relieve the neuropathy and not leave me feeling hung over while awake. The scalp burning might freak me out, but since I know this was only a temporary sign after I started Revlimid (a relative of pomalidomide), I'm fine with it.

My gastritis is GREATLY improved - I'm sure it is caused by dex and not pomalidomide. I take 40 mg of dex by mouth each Tuesday. Almost instantly develop gastritis BURNING PAIN after taking dex and by Friday had very little to no gastritis this week.

Continue nightly Fragmin 15,000 unit injections to thin my blood and prevent blood clots from pomalidomide.

Have been walking Kemmer daily - 0.82 miles on 7 Mar 2013; 1.28 mile on 8 Mar 2013; and 1.28 miles on 9 Mar 2013. My back hurts across my scapula when I walk, but that was happening even before I was officially diagnosed with myeloma.  It is still winter here in Idaho and COLD. My hair is still growing and I think I even need a haircut to even it out.

Able to do laundry, house cleaning, etc. without problems. In addition, I feel like I am clear of thinking of late.

Pomalidomide (Pomalyst) Update For Relapse - After 2 Doses - March 7 2013

Day 1, 5 Mar 2013 I started on 4 mg of pomalidomide (Pomalyst) the evening of 5 Mar 2013. Just like Revlimid, I thought it best of take in the evening since Revlimid made me tired and pomalidomide is in the same family with Revlimid. 

I also took 40 mg of oral Dex (each tablet is 4 mg, so I have to take 10 for 40 mg). The oral Dex almost instantly cured my creepy leg syndrome, but it wasn't long before I had good case of gastritis going AGAIN. I took Carafate Suspension and that helped some, but the best cure for my gastritis is a slice of lightly toasted bread. I attribute the gastritis to the dex and not the pomalidomide. 

So far, I think the only side effect that I've had after one capsule of pomalidomide is being tired almost immediately after taking it. I slept well from 7 PM until 11 PM. After that I didn't sleep too well, but I stayed in bed and only watched television for about 2 hours around 1 AM.

Day 2, 6 Mar 2013 I had continued gastritis. Around 4 PM, my creepy legs returned with a vengeance which I'm pretty sure is from the pomalidomide and I had a frontal headache which I thought might be from our cloudy, off-and-on snowing weather today. I ate dinner early and the headache disappeared. Had another poor night of off and on sleep. I finally took 1/4 tab of oxy (a little medicine goes a long way with me) around 2 AM for my creepy legs and slept until 6:45 AM - this is good.

Day 3, 7 Mar 2013, gastritis. Up this morning, clear of thinking and don't feel hung-over from the 1/4 tab of oxy last night. Mild gastritis. No creepy legs this morning. I do have a burning sensation over the crown of my head, but it does not itch. I had a similar, but WORSE burning and itching when I started Revlimid, but it dissipated after about a week and never returned.

Summary of "maybe" Pomalidomide Side Effects:

• tired after taking
• very creepy legs
• burning scalp sensation

Summary February 1 to February 5 2013

Feb 1 2013 (Friday): Walked Kemmer 0.82 miles.

Saw a not so lucky porcupine along side the road. They are really cute animals.

Feb 2 2013 (Saturday): Walked Kemmer 1.32 miles to the Big Lost River Smelter Bridge. I had upper back pain across my scapula especially on the right side, so I took ½ Percocet, which really helped. I haven’t taken any Percocet since 20 Dec 2012 when I needed it for my post- Bard Power Port placement. Plain Tylenol has been helping adequately with my leg and back pains. I decided to hold my Fragmin injection, which probably wasn’t a good idea. I took ½ Imodium because I am back on Revlimid 10 mg (Day 4/21) and it always gives me diarrhea.

Feb 3 2013 (Sunday): Walked Kemmer 0.82 miles. 

I took ½ Percocet twice for leg pain and “creepy legs”. Started back on the Fragmin 15,000 units injection. I can take 10 mg of dex on Sunday’s and I decided not to take it since I was able to maintain my walking schedule. I had a little bit of chest pain, especially on the left side, which I attributed to stomach acid. I took Pepcid and felt better even though I take Zantac and Prilosec twice daily on a regular basis. My stomach is ALWAYS a bit upset.

Feb 4 2013 (Monday): Didn’t walk Kemmer today because I used all of my available energy to help at the Mackay Food Bank – filling boxes. I wore gloves and mask the whole time – but, I kept up with everyone. I can't believe they haven't fired me since I've missed so many months.

I decided to take just 7,500 units of Fragmin today since my abdomen is one bigger bruise than it usually is from the injections. I took ½ Percocet twice again in the 24 hours for leg tightness, but I’m sure I do not need it.

Feb 5 2013 (Tuesday): Decided not to take any more Percocet for the time being. I walked Kemmer 0.82 miles. 

Stopped to talk to my neighbor who is here to ice fish on the Mackay Dam…always enjoy our visits.

Used my available energy to vacuum part of the house after a friend carried my inversion table upstairs to get it out of the way. Spent a fair amount of time one-with-my-sofa. In fact, my sofa is a big part of my life every day!

Night 3 University of Colorado Hospital August 25 to 26 2011

I had a good night, still have nausea, but pretty well controlled with Zofran IV, Zantac by mouth, and a small dose of Ativan. I didn't get my creepy legs syndrome until 3:30 AM and 1/2 of Percocet took care of that.