Pomalidomide (Pomalyst) Update For Relapse After Cycle 1- 21 Doses - March 27 2013

Drove to St. Luke's Hospital in Twin Falls to have my blood tested after Cycle 1 Pomalidomide (Pomalyst) 4 mg for 21 days, plus 2 days off. Each Cycle 1 consists of 21 days of Pomalyst with Dex 40 mg on Days 1 ,8, 15, and 22 of each 28 day cycle.

I divided my Day 22 - 40 mg Dex in to two doses over 2 days (12 mg and 28 mg).

My white blood cell count remains quite low at 1.5 (norms 4.5-11); ANC (absolute neutrophil count) remains quite low at 0.89 (norms 1.9-8.8), so I'll be living in my N-95 mask when out in public; hemoglobin is as low at 8.1 (norms 12-16) as it has been for a long time and it is no wonder I get out of breath when I walk. They do not give packed red blood cell transfusions for low hemoglobin until the value drops below 7; platelets are real low too at 34 (norms 140-440) and I will keep my daily anticoagulant Fragmin Injections at 7,500 units. They don't give platelets transfusions until the platelets drop below 10. When and if I would need transfusions, I would require irradiated cells because of my 2 failed autologous stem cell transplants.

Communicating via email, both Dr. Smith (UCH- Aurora, Colorado) and Dr. Padavanija (St. Luke's Hospital - Twin Falls, Idaho) do not think I should go off the anticoagulant Fragmin injections vs the new oral anticoagulant, Xarelto - so, I'll continue using the DULLEST NEEDLES in the world that come on the pre-packaged Fragmin injections!

My LDH (an broad indicator of inflammation) has been within the normal range for the last two assessments. 505 (norms 313-618) on 22 Mar 2013 and 535 on 27 Mar 2013.

My kidney function tests are NORMAL today. Creatinine 0.81 (norms 0.52-1.04); BUN 11 (norms 7-17); and GFR >60 (norms >60). This is good news.

My calcium was tad low today at 8.1 (norms 8.4-10.6). And I was experiencing a bit of tingling of my lips - very similar to when I had low calcium during apheresis collecting my stem cells prior to my autologous stem cell transplants. I ate some pudding and had cheese stick which helped some.

Received my 30 mg monthly dose of Aredia (bone building medication) intravenously. I took Claritin 10 mg and 500 mg Tylenol with it to help prevent the flu-like aches and pains Aredia can cause.

I was at St. Luke's 4 hours (10 AM to 2 PM), but they gave me lunch and snacks.

 My Dex look (steroid).

Drove back home to Mackay arriving about 4:30 PM. 

Stopped to check on Dad who has been complaining of a sharp pain in his right knee area, but he told me it was gone now.

Ron brought Kemmer home with her feet COVERED in BLACK MUD - they went rock hunting! We hooked up the hose outside and washed her feet the best we could. I'll have to check Kemmer for ticks as it is that season again.

I had a salmon steak and canned spinach for dinner and fell asleep on the sofa! With my ANC (absolute neutrophil count) so low at 0.89, I have to be careful about my diet again and not eat things like salad, cold-cuts unless they are heated, and no left overs. The St. Luke's Hospital nutritionist Alisa came to talk to me today - she is so knowledgeable.

Pomalidomide (Pomalyst) Update For Relapse After 17 Doses - March 22 2013

Up at o'dark thirty and drove to St. Luke's Hospital in Twin Falls, Idaho to have my blood tested and visit with the oncologist. Discussed decreasing the Dex from 40 mg to 30 mg weekly, and Dr. Padavanija is NOT IN FAVOR. All the research on Pomalidomide indicates it works BEST in the present of Dex. So, I took the 10 mg of Dex that shorted myself on Tuesday. Will try dividing the dose 20 mg on Tuesdays and 20 mg on Wednesdays.

We also discussed changing from injectable Fragmin to the new oral anti-coagulant medication Xarelto. Dr. Padavanija is going to consult Dr. Smith on this this. I'D LOVE LOVE LOVE to get rid of those daily injections! Neither Fragmin nor Xarelto have a reserval agent.

All of my blood values are decreased over the last 10 days since I started Pomalidomide 4 mg on 5 Mar 2013 (17 doses out of the 21 scheduled).

White blood cell count (WBC) down to 1.8 (norms 4.5-11); Absolute Neutrophil Count (ANC) down to 0.89 (norms 1.9-8.8); Hemoglobin down to 9.1 (norms 12-15); and Platelets tanked at 43 (norms 140-440). My LDH was normal at 505 (norms 313-618). 

May have to adjust the pomalidomide dosage or interrupt Pomalyst treatment if my ANC value continues to drop from current 0.89 value to below 0.50. Also, platelet values are evaluated and treatment is interrupted for values less than 25 and reduced dosage to 3 mg for values of 50.  Will have my blood tested again, Wed, 27 Mar 2013.

My kidney function tests are all abnormal this week. Creatinine 1.14 (norms 0.52-1.04); BUN 21 (norms 7-17); GFR 51 (norms > 60).

The blood test for H.Pylori was negative on 22 Mar 2013. So, that is not the cause of my gastritis.

Looks like I'll be wearing a mask FOREVER. Went shopping to pick up my prescriptions and drove home in a light snow storm through the Craters of the Moon National Park, but it was dry in Mackay.

Jani walked the dogs, Kemmer, Kady, and Zoe.

Jani is still here and plans to depart for Colorado on Sunday....oh so sad for Kemmer and me!

Approved for Pomalidomide (Pomalyst) For Relapse - March 4 2013

My medical insurance company approved pomalidomide (Pomalyst) with no copay for me today. FedEx will deliver the medication tomorrow and I'll get started on it 5 March 2013 for my recent relapse on top of my old relapse - haven't had less than 40% plasma cells in my bone marrow since 50 days after my 2nd autologous stem cell transplant which was done on 18 May 2012. Currently my bone marrow biopsy plasma cell count is at 60%. 

Let's hope pomalidomide (Pomalyst) works for me and I can tolerate it. I was unable to take Thalidomide when I was first diagnosed due to severe neurological side effects (unable to think or ambulate). I did fine on nearest relative, Revlimid. Initially, during induction prior to my 1st autologous stem cell transplant on 9 July 2011, I had a Revlimid itchy rash on my scalp and belly, but that quickly dissipated. Revlimid also causes diarrhea. Crossing my fingers for pomalidomide.... 

The MRI of my left hip and pelvis done on 28 Feb 2013 was negative, so I have no idea why it hurts.

Have enjoyed my almost 3 week chemo-free holiday since 14 Feb 2013. My gastritis is much improved. However, it is unnerving knowing my bone marrow is probably producing plasma cells as I type. I have taken dex during this time, but no chemo. And I continue on my Fragmin 15,000 units nightly injections.

Energy is up and I've been walking Kemmer almost daily. I was able to do my volunteer work with the Mackay Food Bank and I enjoyed that - even if I had to wear a mask!

Summary February 8 to February 12 2013

February 8 2013: Couldn't sleep last night and finally got up at 3:15 AM...might as well do something than fret that I cannot sleep. 

My guts are hurting. I took Pepcid on top of Zantac and Prilosec with a little relief. The burning sensation in my stomach with pain that radiates around my chest feels best when my stomach is FULL. 

I noticed today for the first time a little bit of hair in the shower drain - the first hair that I've lost since March 2012! I think this is just normal hair growth and loss.

February 9 2013: Slept much better and have a lot more energy today. Continued gastritis and I took Pepcid again. Worked all day on my medical deductions for my taxes and I'm almost finished.

February 10 2013: Again, slept better and my energy seems good. Revlimid Day 12/21 and diarrhea as usual. Continued gastritis.

The bruise by my Bard Power Port continues BRUISED.

I can take Dex 10 mg on Sunday's, but decided not to - mainly to control my appetite.

I walked Kemmer 1.28 miles. Windy and cold.

Mine Hill from Big Lost River Smelter Bridge Feb 10 2013

New hat from a friend in Alaska. She made it!!!!

February 11 2013: Woke really TIRED this morning. Finished up my taxes and got them in the mail this morning - YEA!

The injection sites on my abdomen have been oozing a little bit of blood (very little), so, I think my platelets must be low. I only gave myself 7,500 units of Fragmin tonight instead of the normal 15,000 units. Called and ordered more Fragmin which will be delivered Friday, 15 Feb 2013.

No walk today because it is just too cold outside.

February 12 2013: 
Bruise continues next to my Bard Power Port, but it starting to change colors in healing.

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!

UCH Follow-up Appointment in Aurora Colorado Day 249 After 2nd ASCT - January 22 2013

Jani and I went to UCH (University of Colorado Hospital) this morning and had my lab values along with my monthly SPEP blood tests drawn via my Bard Power Port. Per usual, my goofy Jani helped with the wait time.

 Who says two Polish girls can't fit in a single recliner???

RN Cara had me turn my neck to get the blood to flow out of my port.

My white blood cell count is even lower than last week at 1.9 (norms 4.5-11); hemoglobin slightly lower than last week at 9.0 (norms 12-16); platelets higher than last week at 106 (norms 140-440); and ANC (absolute neutrophil count) lower than last week at 1.0 (norms 1.9-8.8). This means I still need to protect myself with a mask and good hand washing.

My kidney function blood tests continue normal with a creatinine of 0.98 (norms 0.52-1.04); BUN 11 (norms 7-17) and GFR 58 (norms less than 60). 

My immunoglobulins ( reflection of my immune system) are still pretty much non-functioning on Day 249 after my 2nd Autologous Stem Cell Transplant). I asked when they will recover and I'm not clear, at all, when this will (if ever) occur.

The multiple myeloma SPEP blood test take several days, so I'll have to wait on those results per usual.

Had a nice visit with Dr. Clay Smith (UCH) and he answered all of our questions. Dr. Smith thought I looked tired, so at least we are on the same page with that - I am tired. He thinks this probably due to my hemoglobin value of 9.0 (norms 12-16).

He thinks I need to forego the added Cytoxan 500 mg weekly to see if my blood counts will recover. And if they do recover, maybe add Cytoxan 300 mg weekly. Might want to reduce Revlimid 10 mg to 5 mg, but he wants me to do one change at a time so we can see what happens. Dr. Smith thinks I should see a dermatologist for the small bump on my forehead and get it biopsied - oh joy. Continue on Fragmin 15,000 unit injections - I HATE those injections ONLY BECAUSE The pre-filled syringe needles are DULL DULL DULL! I should write the company a letter! 

Can continue dex schedule of: Wednesday's 20 mg; Thursday's 4 mg; and Sunday's 10 mg for a total of 34 mg per week.

As for the small bump on the right side of my forehead, Dr. Smith advised me to see a dermatologist and have it biopsied. 

Need to get another bone marrow biopsy in about a month to check where I'm at since I am a non-secretory or hyposecretory multiple myeloma patient. This means that my cancerous plasma cells don't send the usual blood test elements in to my bloodstream. Hence, I have to be followed with bone marrow biopsies - I've had nine (9) in 19 months since diagnosis May 2011. I told Dr. Smith I wouldn't have a bone marrow biopsy again without conscious sedation and they don't offer that option at UCH.

I really like Dr. Smith and he has an excellent memory. Me and Dr. Clay Smith, January 22 2013.

Jani and got hamburgers at the UCH Cafeteria and ate them outside in the brilliant, warm sunshine.

Waiting at Valet Parking UCH.

 Temperature at UCH this afternoon 66 degrees - felt wonderful!

Calendar January 9 to 24 2013

Summary 11 January 2013 to 16 January 2013

On 11 Jan 2013, my blood counts were all very low and I HELD my Revlimid 10 mg oral dose and my Fragmin subcutaneous injection dose. I also had a pretty good case of post-shingles pain over my left mid-back area. I took an extra famciclovir (anti-viral) and the pain almost went away. When this shingles pain comes, it is SO TEMPTING to take a pain pill like Percocet, but it is just not necessary if I remember the anti-viral.

Over the weekend 12-13 Jan 2013, I was TIRED and other than doing some laundry, I watched a LOT of football on television. Revlimid speeds my GI Tract up and I end up needing to take Imodium every 3-4 days to keep the crampy diarrhea in check.

My father turned 92 years old on 14 Jan 2013. I went over to his place to wish him a Happy Birthday and did his dishes…not much of a celebration and I felt badly about that. His friends brought him a chocolate birthday cake that afternoon.

My hair is WICKY…won’t go straight and is frizzy at the ends – I’m sure changes from Cytoxan that I had just 2 doses of.

Monday, 15 Jan 2013, continued tired. Would like to go out and walk with Kemmer, but the outside temperature has hovered from MINUS 11 to 10 degrees above for the last week and it just isn’t possible.

Tuesday, 16 Jan 2013, we had another inch of new snow and I was able to shovel the front walk and in front of the garage doors – but, not the driveway. My pulse soared to 125, but came back down to 98 when I sat down.

Today, Wednesday, 16 January 2013, I packed Bart with my stuff for an overnight in Twin Falls, Idaho. My oncologist Dr. Padavanjia faxed an order for blood work to Lost Rivers Medical Center in Arco, Idaho (just 30 miles down the road) for this morning. Then, I was to call the results to see if I needed to proceed on to St. Luke’s Hospital in Twin Falls for my weekly chemo (carfilzomid/dex/Cytoxan).

My white blood cell count was low at 2.2 (norms 4-11.2), hemoglobin was low at 9.1 (norms 12-16); platelet count was at 69 (norms 140-440); and Absolute Neutrophil Count (ANC) low at 1.08 (norms 2-8).

 

All of the values are low, but slightly higher than they were on 11 Jan 2013, so that means they are treading upward in the direction of normal.

I spoke with RN Anne at St. Luke’s Hospital and she spoke with Dr. Padavanija who decided that they would HOLD my chemo for today and tomorrow (Cycle 3, Week 3, Days 1 and 2). I need to continue to take my Revlimid 10 mg tonight and I took 20 mg of dex this morning. Dex has anti-myeloma action in multiple myeloma and it helps with my energy too. Will continue Fragmin (anticoagulant) at:
Platelet Count Greater Than 50 - Take Fragmin 15,000 units
Platelet Count Less Than 50 - Take Fragmin 7,500 units
Platelet Count Less Than 30 - Hold Fragmin and Revlimid

My kidney function blood tests remain normal and I am happy for that.

Late this afternoon, I shoveled parts of my driveway and I’m sure the dex helped with that. And the 11 degree above helped too!

Bone Marrow Plasma Cells down to 40 Percent from 60 Percent - January 2 2013

Chilly drive to St. Luke's Hospital MSTI, Twin Falls, Idaho with temperatures hovering at MINUS 12 degrees.  However, the roads were dry, skies blue, with sunshine.

Had blood drawn from my new Bard Power Port for the first time - all went fine except for the adhesive dressing they used to cover the Huber Needle access - which itched me. They took it off and replaced it with my Durapore silk tape.

Saw Dr. Padavanija and she had my bone marrow biopsy results from 20 Dec 2012. My plasma cell concentration had decreased from 60 percent (17 Oct 2012) to 40 percent after 2 cycles (a cycle is one month in duration) of carfilzomib/dex/revlimid 10 mg. She was able to speak with Raphael Foncesa, MD at Mayo Clinic Scottsdale, AZ during my appointment to get recommendations on how to proceed. Dr. Foncesa said he was hoping for a better response and now wanted to add Cytoxan to the carfilzomib/dex/revlimid and repeat bone marrow biopsy after 2 cycles.

So, off to the infusion room I trotted. I received the bone building medication, Aredia first at 30 mg vs the 90 mg that I had been receiving. I'm hoping this will reduce or eliminate the flu-like and tiredness that the higher dosage has caused. I have Terry, a 50 year old man from New Jersey who commented on my last Aredia administration to thank for the decreased dosage and the Lancet article supporting its use. Thanks Terry! PS I was born in New Jersey.

RN Brittany gave me IV Aloxi as a pre-treatment for the Cytoxan. Then, I got my 20 mg of Dex IV. Both Dr. Padavanija and Dr. Foncesa are in agreement that I can take more Dex during the week - I will start at 10 mg about 3 days after the 20 mg dose - this should help my tiredness.

I spent well over an hour on the phone with my specialty pharmacy trying to get a refill on my Fragmin 15, 000 units pre-filled injections...this does NOT make me a happy camper!

I got my first Cytoxan dose at 500 mg. I got it IV today, but will be taking it orally once my insurance approves it and it is delivered.

I arrived at St. Luke's MSTI at 10:20 AM and didn't get finished until 5:45 PM - a long day in the Infusion Center.

Went to Taco Bell and checked in to my motel - just 9 degrees outside. Fell asleep and woke with redness over my Bard Power Port site...perhaps I am allergic to the plastic on the Huber Needle. The old port site is red too - from the dressing they initially used yesterday.

My other labs from 2 Jan 2012 drawn prior to the start of Cycle 3 of carfilzomib/dex and the beginning dose of cytoxan.

My white blood cell count is low at 3.0 (norms 4.5-11); hemoglobin low at 10.4 (norms 12-16); platelets slightly low at 138 (norms 140-440); and Absolute Neutrophil Count (ANC) low at 1.73 (1.9-8.8).

My kidney function tests are ALL NORMAL on 2 Jan 2012

Creatinine 0.94 (norms 0.52-1.04); BUN 12 (norms 7-17); BUN/Creatinine Ratio 13 (norms 10-20) and GFR >60 (norms > 60).