Velcade Subcutaneously and Dex Intravenously - March 12 2012

Went to UCH for my 3rd Week of Chemotherapy Maintenance of Velcade Subcutaneously and Dex 20 mg Intravenously...drove myself. I received the first 2 weeks in Idaho. I will need one more dose next Monday, March 19 2012 to complete the 4 week cycle.


Today is Day 14 of 14 for my Revlimid 10 mg and I will have the next 14 days off. I did not re-order my Revlimid from Curascript until after I see Dr. Myint on Thursday with my bone marrow biopsy results since he may change the dosage and/or medication.


Took my 24 hour urine jugs in to the BIC (collected 0600 March 11 2012 to - 0600 March 12 2012.


Went to the lab draw area in the Cancer Clinic. Had to be poked twice before they got my blood.  Then, on to the Infusion Clinic where I was scheduled to wait an hour while my blood results were prepared and my appointment in the Infusion Clinic was at 1:45 PM. I worked on a jigsaw puzzle. At 2:15 PM, I checked with the desk if I had been forgotten. Nope, just running late, but they did my vital signs and weight (158 with clothes) and put me in Chair 16 with RN Helen. Again, I waited until about 3:30 PM. My Dex order wasn't there and they had to call the Nurse Practitioner for the order. I watched television. RN Helen was EXCELLENT in getting my IV started in my left hand.

RN Helen hung my Dex and it ran over 15 minutes. Here is my "will I ever get out of here look". I need to work on my PATIENCE. 

Donna from Scheduling came to visit me twice. She has been working hard to get a PET SCAN scheduled for me so Dr. Myint will have the results this coming Thursday. My insurance initially rejected the pre-authorization and required that my doctor talk to their doctor first. This was accomplished quickly and my PET SCAN is scheduled for tomorrow, March 13 2012 at 4 PM. I was instructed to not eat anything after noon tomorrow. Donna is always so nice to me!!

You can see RN Helen in the background arriving with my Velcade which she gave to me in my left arm. We had a discussion on the appropriate site for the Velcade and Helen indicated that the pharmacist said they prefer the abdomen or thigh over the arm. However, my stomach is covered with bruises from my daily Fragmin 12,500 unit injections and my thighs are tight from all the mountain walking I do at home in Idaho, so I wanted the stingy injection in my arm.

I finally got out of there at 4:15 PM for a 1:45 PM appointment that should have taken 30 minutes. I'm sure they were running so far behind because they were attending to other patients that exceeded their allotted time because of their health needs - so, I should not be upset with my delay.

Velcade Subcutaneously - March 7 2012

I had my second dose of Velcade subcutaneously yesterday, March 6 2012. This is how my right arm looks almost 24 hours later.

This is my left arm where I had my first Velcade subcutaneously on 27 February 2012. The bruised area on the far right of the photo below is a discoloration left over from a Fragmin injection.

M-Spike on the Rise - Day 167 Post 1st ASCT - Results from February 27 2012 SPEP

My m-spike value has increased to 0.59 on 27 Feb 2012 from 0.15 on 15 Jan 2012.  I was 5/12 months post stem cell transplant (Day 167 Post 1st ASCT) at the end of February 2012 (autologous stem cell transplant on 13 Sept 2011). This value most likely represents RELAPSE. 
I called my transplant nurse coordinator at UCH, Lindsey McMenimen. Lindsey will share the results with Dr. Myint and the bone marrow team on 6 March 2012 at their weekly patient update meeting and call me later with their plan. I am not happy about the increase, but plan to adjust one day at a time - multiple myeloma is a tough cancer to have. I continue to feel pretty well with the exception of some mild back pain and shingles pain. I'm on Day 8 of 14 of Revlimid 10 mg and I had Velcade subcutaneously yesterday along with 20 Dex intravenously.

1st Subcutaneous Velcade Injection - February 27 2012

I had my first subcutaneous Velcade injection in the back of my left arm yesterday, February 27 2012. The medicine is a bit stingy on the way in, but resolves quickly. This is a picture of my arm 20 hours after the injection. It looks red, but it does not hurt. This started my 2nd Cycle of Maintenance Chemotherapy Velcade once a week for 4 weeks.

I also received 20 mg of Dex intravenously and Zometa yesterday February 27 2012. Zometa makes me ache all over and feel like I have the "flu" for 24-48 hours and this time was no different.


I start 14 days of Revlimid 10 mg tonight, February 28 2012.

Started Maintenance Chemotherapy Cycle 3 of Revlimid 10 mg Today - January 31 2012

I started my 3rd Maintenance Chemotherapy Cycle of Revlimid 10 mg by mouth today - 14 days on and 14 days off, January 31 2012.

Other than low white blood cell counts, fatigue, fluid retention, dry skin, cramps in my leg calves, and perhaps my left leg pain, I have not experienced side effects from Revlimid like the skin hives I had when I took 25 mg prior to my autologous stem cell transplant on September 13 2011.

Chemotherapy Maintenance - December 26 2011

Drove myself to UCH (120 miles round-trip) this morning for my blood draw and last weekly intravenous Velcade/Dex for Month 1 of Chemotherapy Maintenance. 


UCH was a ghost-town today with everything shut down except the Infusion Center and Inpatient Units. Parking Lot almost empty. 


Had my blood drawn successfully on the first poke. My values are okay. However, my white blood cell count has dipped to below normal at 3.2 (norms 4-11.1); hemoglobin is normal at 13.1 (norms 12.1-16.3); and platelets have gone up to normal 190 (norms 150-400). I think the white blood cell count is to be expected - it takes at least one year to recover normal bone marrow function after an autologous stem cell transplant.

My Absolute Neutrophil Count (ANC) is in the normal range at 2.0 (norms 1.8-6.6), but has dipped from my previous values of 3.6 and 3.7. Will keep up the good hand washing and wear a mask in crowds.

RN Laurie had no trouble starting an IV in my left hand. They are using a small 24 gauge IV catheter.

I continue to have some numbness and tingling in my finger tips especially on my left hand. Plus, my tongue is sick and my taster is off - chemo related I'm sure.  I was in and out of the Infusion Center in record time! Drove back to Greeley, Colorado.


Now, I will be off of Velcade/Dex for 2 months until I start back on a one month weekly cycle March 5 2012 (this is a one month on and 2 months off schedule). I will take oral Revlimid 10 mg 14 days on and 14 days off. I finished my first 14 days on December 20 2011 and will restart again on January 3 2012.


Tomorrow I leave Colorado for home in Mackay, Idaho (680 miles one way). My sister, Jani, is following in her truck because I have too much stuff to fit just in my car. And anyway, that way she'll get to see our father, Frank, who will be turning 91 years old on January 14 2012.

Day 98 - Neuropathy - December 20 2011

Well, I've started to get a bit of neuropathy on the fingertips of my left hand that I experience as numbness and some tingling. I've had 3 weeks of intravenous Velcade 1.7 mg/Dex 20 mg with one more week to go (December 26th) and I finished 14 days of oral Revlimid 10 mg yesterday.

I've started back on the L-Glutamine protein powder which might help. My Fort Collins, Colorado oncologist, Dr. James Moore suggested I take L-Glutamine Powder 10 g dose 3 times a day when I was getting my induction chemotherarpy before my stem cell transplant. I did not experience any neuropathy in my fingers at that time. I mix the powder in a bit of grape juice and it is easy to get down.

I'm also more constipated this round than before. I've taken 4 Senna S and 2 Magnesium 500 tablets each night and have had very little results. Tomorrow, I might have to drink the Miralax Papaya Banana Apple Protein Shake that Danny Parker gave me the recipe for. For me, constipation is the worst side effect.

Day 97 - Maintenance Chemotherapy Administration Month 1 Week 3 - December 19 2011

Jani and I left Greeley, CO for UCH (Aurora, Colorado) at 5:40 AM in the dark. I had fasted for 12 hours because I was having a lipid panel drawn this morning.
I was anxious because today was the first day that I didn't have either a Trifusion Hickman Catheter or a Bard Power Port for intravenous access. From now on, all of my blood will have to be accessed from peripheral (from my arms and hands) blood draws.
My blood draw went well from my left arm with only one poke by RN Regin! My anxiety was unwarranted.
We waited in the UCH Infusion Waiting Room while my blood tests were being done in the lab.

My blood values continue excellent. My hemoglobin is normal at 12.8 (norms 12.1-16.3); white blood cell count 5.1 (norms 4-11.1); and platelets are just a tad low at 142 (norms 150-400).

 My lactate dehydrogenase is normal at 173 (norms 98-192) - a test of inflammation.

 My liver enzymes continue a tad high which is probably due to the Fragmin Injections I take daily. Alanine Aminotransferase 60 (norms 0-47) and Aspartate Aminotransferase 35 (norms 0-47).

My fasting lipid panel turned out fantastic, which is hard to believe since I've been eating 2 eggs and ham EVERY day and plenty of steak since my transplant in September. My cholesterol is just 178 (norms 0-200); HDL is 72 (norms 40-60); LDL 84 (norms 0-130); Triglycerides 110 (norms 0-150); and something called Non HDL Cholesterol 106 (norms 0-160) which is your total cholesterol minus your HDL “good cholesterol. The Non HDL Cholesterol may predict your risk of cardiovascular disease even better than your LDL “bad” cholesterol. That’s because your non-HDL number tells you all the bad cholesterol circulating in your blood – not just your LDL cholesterol.  I do take Lovastatin 40 mg daily for high cholesterol.



After my blood tests came back, RN Laura started an IV in my left hand with only one tiny poke. She was awesome! I got my Dex 20 mg and Velcade 1.7 mg. So AGAIN, my anxiety was unwarranted.

 I was also scheduled to get Zometa 4 mg, but it was not on RN Laura's order sheet. So, after some delay, it was ordered and administered intravenously. I will get Zometa (bone building) monthly.

Arrived in the oncology clinic more than 1 hour after my 9 AM Scheduled Appointment. Didn't have to wait to long and was seen by NP Angie (who works part-time). She was great and answered all of my questions. She will be sending today's clinic visit notes to my new oncologist in Idaho Falls, Idaho - Christian Shull, MD. They have scheduled in intake appointment with Dr. Shull for January 4th at 3 PM.

NP Angie said that I should have repeat echocardiogram at the very beginning of February 2012 to monitor the blood clot in my heart. She said I could walk and even ride an exercise bike now. I will continue on the Fragmin for another month and then they will decide if I can go back to aspirin for blood clot prevention.

She agreed that I might be having break through shingles on the back of my right thigh and recommends that I take 500 mg vs 250 mg of Famciclovir during the month that I receive Velcade IV each week.

NP Angie recommended that I stop taking the fat-soluble B6 Vitamin, but continue on the water-soluble B12 vitamin.

I should NOT be around any children less than 1 year of age and cautiously around any other children for a full year after my transplant and after I receive all of my childhood immunizations in one year from the date of transplant. I cannot visit any home that has a wood burning stove for a year. Fortunately, I have electric and propane heat at my home in Mackay, Idaho. I will continue taking Bactrim twice a week (Monday and Thursday) for one year to prevent lung infections. I can have house plants now and I can water them myself. I will not be allowed to mow or do yard work for 1 year. I can vacuum now, but should wear a mask while doing it.

I will need to have monthly immunoglobulins, M-Spike, and free light chains blood tests. As long as these blood tests remain normal, I'm in remission. NP Angie cautioned me to watch for increasing restless leg and leg heaviness and aches which could be a Velcade side effect which would have to be addressed if they occur.

All in all, NP Angie said that barring the heart blood clot,  I've done "as good as it gets" with my

stem cell transplant and achieving stringent complete remission.

Stopped at Donna, Scheduling and made my follow-up appointment with Han Myint, MD on April 12 2012 at 1 PM. Dr. Myint left UCH today on medical leave (he is having an elective surgery) through the end of February 2012. I wish him the best of luck and hope everything works out well for him. Donna always gives me a warm hug.

So, I only have one more Velcade/Dex intravenously appointment at UCH on Dec 26 2011 and then I'll FINALLY be HEADING HOME TO MACKAY, IDAHO on Dec 27 2011.

We were gone 6 hours which is at least 2 hours longer than we should have been gone.

Day 91 - A Yippee Kind of Day - December 13 2011

UCH scheduled my Bard Power Port removal for this Thursday, December 15 2011 - Yippee!

I'm going home to Mackay, Idaho on December 27th! My Transplant Nurse Coordinator, Lindsey, and Social Worker, Amy, are making all the arrangements with my new oncologist in Idaho Falls, Idaho, Christian Shull, MD. So, I'll finish out my first month of maintenance Velcade/Dex/Zometa/Revlimid chemotherapy and head home the next day. I've been gone since May 11 2011.

Yippee! The Prilosec 40 mg and Zantac 150 mg one hour prior to my Velcade/Dex yesterday worked magic and I did not have ANY acid burning in my esophagus and stomach like I had in Week 1 Month 1.

And, another Yippee! I bought a new 15 inch MacBook Pro laptop with all the same software in Apple versions today! They threw in a new printer and scanner for free. I went shopping fully intending on getting a new Dell PC, but I (well, maybe Jani twisting my arm a little) decided that if I was going to have to learn the new Windows operating system (I have Windows XP on this old laptop I'm using now) that I might as well learn the MacBook Pro way. They had to order my MacBook Pro today, so I won't get it until just before I leave for Idaho. However, they are taking all of my external harddrives (I have 4) and converting the files from PC to Apple in some way, so when my MacBook Pro arrives, I'll be able to read my many files. However, if my blog ceases, you can pretty much bet, I'm somewhere on the learning curve. Jani is a MacBook Pro user and I'm going to start taking some kitchen counter lessons beginning tomorrow.

Jani and I baked Gramma Rebein Christmas Cookies today for neighbors...and they turned out wonderful the first time...we usually can't remember how to make them each year --- but, we did good this year on the first attempt!



Day 90 - Maintenance Chemotherapy Administration Month 1 Week 2 - December 12 2011

Jani took me to UCH for my second week of Month 1 Maintenance Chemotherapy of intravenous Velcade (1.7 mg) and intravenous Dex (20 mg). In the hour prior to the administration, I took 40 mg of Prilosec and 150 mg of Zantac by mouth in an attempt to reduce the ACID esophagus and stomach I had following last week's dose.

The headphones for the television on their smallest setting are still way too large for my tiny head with a skiff of new hair. Now, about this mask....either I'm the only patient in this huge infusion center that has had a stem cell transplant, or I'm the only patient who is following the MASK ALWAYS ON when visiting UCH for ANY REASON rule! I never see anyone else with a mask on anywhere in the whole hospital!

My blood values were all good. I'm not anemic with hemoglobin at 12.9 (norm 12.1 to 16.3);  platelets (clotting) normal at 159 (norm 150-400) although it did drop from 203 last week; and white blood cells at 5.0 (norm 4-11.1)

My liver enzymes are almost normal. The Fragmin injections I take daily interfere with these values.

My Lactate Dehydrogenase (inflammation) continues normal at 165 (norms 98-192). It  was as high as 540 after the Mephalan chemo for my stem cell transplant and was 201 three weeks after my diagnosis.

Still no word on the scheduling of my Bard Power Port removal by Interventional Radiology...maybe tomorrow, they will call????


Jani spent almost the entire time in the pharmacy getting refills for my Famciclovir 250 mg tablets (shingle prevention) and Bactrim  800-160 tablets (lung infection prevention)...oh, my happy caregiver???


When I got home, I took 3 Senna-S and 1 Milk of Magnesia in an attempt to prevent constipation caused by Velcade/Dex. I normally take 1 Senna-S at night and no Milk of Magnesia.

Day 84 - Revlimid 10 mg Maintenance Chemotherapy December 6 2011

The UPS truck driver just delivered my 14 day supply of 10 mg Revlimid. You have to sign for it.

 I took my first 10 mg Revlimd pill today, December 6 2011

Day 83 - Maintenance Chemotherapy Administration Month 1 Week 1 December 5 2011

After my blood  values were back, we were escorted to the infusion center. I was weighed and measured for height. My weight has crept up to 151 pounds (but, I did have heavier clothing on since it was only 10 degrees outside) and my height is steady at 5' 2 1/4 ".


We waited in the recliner area for the nurse to hang the Decadron and Normal Saline which was scheduled to run over 15 minutes.

Then, I should have gotten my quick intravenous push Velcade (1.7 mg dose based on 1mg/metered squared), but I asked if they were going to give me Aloxi (long acting intravenous anti-nausea medication) along with my Velcade. That question really delayed things since they do not pre-mediate with ANY anti-nausea medication for Velcade/Decadron. When I was receiving my induction chemotherapy from Dr. Moore at Front Range Cancer Center in Ft. Collins, Colorado, it was their protocol to always give the Aloxi with the Velcade/Decadron, so that is what I was used to.


The nurse explained that my insurance might not pay for the Aloxi, but I told her they paid for it in Ft. Collins. They offered me Kytril (anti-nausea) or Zofran (anti-nausea) and then went on to explain that patients receiving Velcade/Decadron do no need ANY anti-nausea medication. So, I decided to fore go the medications for anti-nausea, but they did send me home with Zofran tablet if I started to feel badly on our long drive back to Greeley, Colorado in rush hour traffic. More later on if my decision to go without anti-nausea medication was good idea or no.

My wonderful caregiver sister had a bit of a melt-down on Day 83. What should have taken 1 1/2 hours took 3 hours and then add the 1.25 hour drive each way and we were pretty much gone all afternoon into the evening. Good thing Jani wasn't wearing a mask like I had to for all that time - or, I think she would have gone ballistic.

Our drive home was a chilly one - temperature dipped to Minus 1, but was mostly 2 above as we drove from Aurora, Colorado to Greeley, Colorado.

Day 83 - Maintenance Chemotherapy Begins Month 1 Week 1 - December 5 2011

In 10 degree temperatures with clear skies, Jani drove me to the University of Colorado Hospital (UCH) and I had my blood drawn via my Bard Power Port (I always put Emla Cream over the site on my right chest wall 1 hour before each access) prior to the maintenance chemotherapy administration. My hemoglobin remains normal at 12.8 (norms 12.1-16.3), my platelets remain normal at 206 (norms 150-400), and my white blood cell count went down from 12/1/2011from 5.1 to 3.9, which is only slightly abnormally low (norms 4-11.1)

My Lactate Dehydrogenase Blood Test continues normal at 145 (norms 98-192)

 My liver enzyme tests, Alanine Aminotransferase and Aspartate Aminotranserase which had been high when I first started the Fragmin (blood thinner) injections have decreased to 43 for Alanine (norms 0-47) and 28 for Aspartate (norms 0-47).

 My blood phospherous level has been increased since 11/9/2011 and was down from 5.7 on 12/1/2011 to 4.6 today, 12/5/2011 (norms 2.7 - 4.5). I'm not sure what this means.

 In addition to these blood tests, they draw and report the total CBC with Differential, Comprehensive Metabolic Panel, Magnesium, and Uric Acid. All of those values were normal today.

After the blood draw, my baby sister, Jani, and I sat in a waiting room for the infusion center for more than an hour. They need more comfortable chairs.

Day 83 - Maintenance Chemotherapy Plans - December 5 2011

I started my Maintenance Chemotherapy today at UCH. My Maintenance Chemotherapy schedule will be:

• Velcade intravenously (1mg/metered squared dosage) and Decadron intravenously (20 mg) to be administered once a week for Month 1 (Dec 2011) and OFF for Month 2 (Jan 2012) and Month 3 (Feb 2012) and back on once a week for Month 4 (Mar 2012), off for Month 5 (Apr 2012), off for Month 6 (May 2012), and back on for Month 7 (June 2012), etc, etc. etc for at least the next 2-3 years.
• Revlimid by mouth (10 mg) 14 days on and 14 days off each month for the next 2-3 years
• Zometa (bone building medicine) intravenously once a month

Day 80 - Bummer News - December 2 2011

My UCH Nurse Coordinator just called with the results of my echocardiogram done yesterday. The large blood clot in my heart has reduced in size by 2/3rds since it was discovered November 2 2011. The inside measurements of the right atrium of my heart are 4 x 4 cm. The clot was originally 1.3 x 2.7 cm - so in proportion to the size of my atrium - it was big.

In light of the continuing clot, albeit much smaller, they want me to stay locally here in Colorado for another month before I travel home to Idaho - bummer for me!  But, I've been gone for so long now (since May 10 2011), what's another month???

They want me to start my maintenance Velcade/Dex chemotherapy at UCH next week and they are ordering my Revlimid 10 mg to be delivered here in Greeley, Colorado.

Day 79 - Bone Marrow Biopsy Pathology Report from November 2 2011

I finally got my surgical pathology results from my bone marrow biopsy done on November 2 2011. Even though it indicates that I have less than 1 percent residual plasma cell myeloma, I'm still considered in complete remission. This is the nature of multiple myeloma - extremely hard to eradicate. The stem cell transplant was just a treatment and not a cure. This is why I'll be on maintenance chemotherapy for at least the next 3 years. My maintenance chemotherapy will consist of Revlimid 10 mg by mouth 14 days on and 14 days off each month and Velcade intravenously 1 mg/metered squared once a week for 4 weeks and 8 weeks off - then cycling again with 4 weeks on and 8 weeks off.

Day 69 - Eve of Trifusion Hickman Catheter Removal - November 21 2011

We are headed to the University of Colorado Hospital (UCH) Interventional Radiology tomorrow morning to have my Trifusion Hickman Catheter removed. So hoping the blood clots in my heart have resolved and the removal goes smoothly. As instructed, I have held my Fragmin blood thinner injection today. I'd be lying if I told you that I was not nervous. They are hoping they do not have to remove my Bard Power Port under the skin on my right chest wall because I will need it for my maintenance chemotherapy for the next 3 years.

Day 57 - The NEWS - November 9 2011

Jani took me to the University of Colorado Hospital today for my blood draw and appointment with transplant doctor, Han Myint, MD. We were both anxious as we waited in the exam room for my appointment. I wore my lucky Mackay t-shirt today~

 Reading over the list of questions that I have for Dr. Myint.

Then, Dr. Myint came in and I received my bone marrow biopsy of 11/2 results.

I am in Stringent Complete Remission!!!!!!!  No cytogenetics (abnormal DNA) and less than 0.01 plasma cells (anything less than 0.05 plasma cells is considered remission) done with the CD138 stain for myeloma cells.

If I didn't have the blood clot in my heart, Dr. Myint would have started me on maintenance chemotherapy of Velcade (IV) and Revlimid (pills by mouth). AND, if I didn't have a blood clot in my heart, I could have headed home to Mackay, Idaho tomorrow with return visits to UCH every 3 months.

Click on images below to enlarge: