Walked 2.2 miles with Judy Richter this morning June 12 2011

Judy Ricter and jm Walking in Greeley, Colorado June 12 2011

iPhone for jm June 11 2011

Jani decided I needed an iPhone so I'd have something to do while I'm getting chemotherapy. I can barely call and answer a phone message on my old regular cell phone and had no text messaging plan. But, now - I have it ALL and hopefully I can learn now to use the little dear.



Wonderful weather in Greeley, Colorado June 11 2011

jm walking Kemmer, Zoe, and Kady June 11 2011. Kady is 10 years old and has a bum knee. A specially made brace enables her to walk normally.

University of Colorado Hospital called today June 10 2011

When I got home to Jani's house, the University of Colorado Hospital Bone Marrow Transplant clinic called and told me that I had an appointment with Han Myint, MD on Wednesday, June 15 2011 at 11:30 AM for labs and 12:30 PM for the doctor consultation.

This surprised me because I didn't know that Dr. Moore (my oncologist in Fort Collins, Colorado) had arranged for the appointment with Dr. Myint, who is the Director of the Blood and Marrow Transplant Program at the University of Colorado.

Pre-operative Appointment with surgeon, Stefan Pettine, MD June 10 2011

Jani and I went to the Pre-Op appointment with surgeon, Stefan Pettine, MD at the Northern Colorado Surgical Associates at the Harmony Campus in Fort Collins, Colorado at 11 AM.

 Jani and I with our goofy reading glasses which we are ALWAYS looking for.

An infusaport will be surgically implanted beneath my skin right under my collar bone on the left side. No tubing will stick out of my skin, however, the the infusaport will appear as a lump on my skin that will be visible.



 Photos from Mark Fusco

Medicine is given through the infusaport through a special needle called a Huber needle. This needle is "L-shaped and inserted through the chest skin over the surgically implanted dome or port connected to a catheter threaded into a large vein in my upper chest.

Photos from Mark Fusco

I will be able to swim and shower normally after the small surgical incision heals after 10-14 days since the entire device is located beneath the skin. Often the skin over the port where the Huber needle goes in is somewhat numb, but a topical anesthetic cream came be put over the site on the skin where the needle goes in to further anesthesize the area.
The infusaport must be flushed with heparin only once a month and after it is used for intravenous medication delivery. Infusaports can considered "permanent" and can last a long time - even years.

I'm to report to the Harmony Ambulatory Surgery Center in Fort Collins, Colorado at 7 AM Monday June 13, 2011 for the procedure with Dr. Stefan Pettine at 8:30 AM. Dr. Pettine will leave a Huber Needle hooked to a syringe of normal saline in the newly implanted infusaport for my 1 PM 1st chemotherapy appointment at Dr. James Moore's office (right next door). 

Dr. Pettine suggested that I keep a sterile Huber Needle with me when and if I travel back to Idaho just in case it would need attention. The infusaport CANNOT be accessed by any other type of needle.

Acyclovir - Started June 9 2011

I started Acyclovir 400 mg. last night June 9 2011 (a white pill). I took it with food as recommended. I woke up in the night with an awful gut ache. Couldn't find the Prilosec and I had to wake Jani up to find it. I took the Prilosec and the ache subsided. I also have a bit of headache and left-sided neck pain this morning, but Jani thinks that might be because I fell asleep in the recliner at PET Imaging with my neck in a weird position.

I'm taking the Acyclovir to prevent a recurrence of shingles which I first had in August 2009 even though I had the live shinges vaccine May 2010. Here is a picture of the shingles I had in 2009 on my right lower back about 9 days after they broke out  - very PAINFUL.
Shingles are caused by the chickenpox virus (varicella) that remains in your body after you've had chickenpox (I had them as a child when I lived in Mountain Home, Idaho circa 1956). Then, when your immune system is depressed for any reason, the virus can re-appear as painful shingles (usually demonstrated by skin lesions, but can also be internal).



Intravenous Access Port - Bard Power Port Scheduled for June 13 2011

I will have a pre-operative office visit with surgeon, Stefan Pettine, MD tomorrow (June 10, 2011) at 11 AM at the Harmony Surgical Center. Then, I will have the port place in my chest on Monday morning, June 13 2011 at 7:30 AM at the Harmony Surgical Center. The Harmony Surgical Center is the building right next to Dr. James Moore's Front Range Cancer Center.

So, I will have the intravenous port for my 1st chemotherapy session on Monday, June 13 2011 at 1 PM.

PET Scan (positron emission tomography) Procedure June 9 2011

Jani and I arrived at PET Imaging in Fort Collins for my PET Scan procedure at noon. It was raining a bit and chilly. I had my plain water with me. You are not allowed to eat, but you can drink as much plain water as you want prior to the procedure.

It hailed in Fort Collins last night and the hail was still piled up outside PET Imaging.

Went in and filled out a history that took several minutes to complete. They explained that Jani could not wait with me because of the radiotracer medication that I was to be injected with prior to the PET Scan. So, Jani left and went shopping!

Stacey of PET Imaging took me back to a room and weighed me (138 pounds). Then we went to another room with a recliner where Stacey started a little IV (intravenous line) in my right hand. She covered me with 2 warm blankets as the temperature in the building was chilly (probably to protect the PET Scanner machinery).

Stacey checked my blood sugar with the first blood from the IV - it was 78 (quite normal). Stacey pushed the radiotracer housed in a tungston lined syringe in to my vein. There was no sensation from the radiotracer.

I was left alone watching television for 1 hour while the radiotracer made its way through my body. I actually fell asleep waiting.

Jarrod of PET Imaging startled me awake and took me back to the PET Scanner. I asked him if he would take my picture in the scanner and he said in his 6 years of working there, I was the first patient to make such a request! He was very cooperative with my request.

I first went in to the scanner feet first for the scan of my feet to my groin. I just had to hold still and it was not hard. As you can see, the scanner is quite open and the room is bright and airy. This part took about 20 minutes.

Then, I was reversed on the scanner table with my head going in first for the rest of the body. This scan did my whole body.

I had a bit of a coughing spell as the second part began. Stacey brought me a drink of water which cured that. The second part took about 30 minutes.

PET Scan completed. Jarrod explained the protein only diet the night before kept the radiotracer from accumulating in the heart.

I was advised not to hug anyone for 1 hour. They gave me a little bottle of water and some trail mix until I could get something to eat since I had been NPO (nothing per oral) since midnight the night before. The staff at PET Imaging could not have been nicer.

I can tell you that a PET Scan beats a Bone Marrow Biopsy hands down!

Jani was in the waiting room and we went out to the car where she made us delicious turkey sandwiches. We had packed the cooler with a picnic this morning because we knew I would be starving.







Prescriptions to Pick Up Now June 8 2011

• Diflucan 100 mg daily (to treat oral yeast) - just need 2 more days to complete 5 day treatment form June 6 to June10, 2011
• Emla Cream (Lidocaine 2.5%, Prilociane 2.5 %) to numb intravenous access port site prior to IV chemotherapy days - Sandy Baird told me to use this liberally!)
• Compazine Tablets 10 mg (as needed for nausea and vomiting at home)
• Acyclovir 400 mg daily (anti-viral to help ward off shingles)

Just in Case - Over the Counter Things to have on hand June 8 2011

Here is the list of things Jani made after watching the Chemotherapy Education DVD that we need to have on hand at home - just in case.

• Baking Soda (to make mouth rinse)
• Sea Salt (to make mouth rinse)
• Biotene Mouthwash and Biotene Gum
• Antibacterial Wipes (to keep surfaces clean)
• Hand Sanitizer (to keep by front door for all visitors at the house)
• Senokot - S (to treat constipation)
• Milk of Magnesia (to treat constipation)
• Imodium AD (to treat diarrhea)
• Thermometer (to monitor temperature)
• L-Glutamine powder
• B6 100 mg
• B12  100 mcg
• Chapstick
• Lotions (to treat extra dry skin)
• Throat Lozenges

PET Scan (positron emission tomography) Preparation June 8 2011

I'm scheduled for a PET Scan (positron emission tomography) tomorrow at noon. In preparation for the procedure, I was told to eat only protein the night before and avoid carbohydrates. Jani barbecued steaks for dinner and I also had cottage cheese and a cheese stick. I can eat nothing 6 hours prior to the test, but can drink plain water.

The PET Scan test involves injecting a very small dose of a radioactive chemical, called a radiotracer, into the vein of your arm. The tracer travels through the body and is absorbed by the organs and tissues being studied. Next, you lie down on a flat examination table that is moved into the center of a PET scanner—a doughnut-like shaped machine. This machine detects and records the energy given off by the tracer substance and, with the aid of a computer, this energy is converted into three-dimensional pictures. A physician can then look at cross-sectional images of the body organ from any angle in order to detect any functional problems.

Once the radiotracer is injected into a vein, it typically takes 1 hour for the radiotracer to travel throughout the body and be absorbed into the organs or tissues to be examined. The scan itself will take about 30 minutes.  You must remain still for the entire length of the exam, since motion will reduce the quality of the images.

Dr. Moore explained that multiple myeloma can be found in any tissue in the body and not just bones and bone marrow.

And because I have not yet met my insurance deductible, I get to pay 15 percent or $288 for the procedure ~ oh yippee ~

L-Glutamine, B6, B12 Anti-Neuropathy Side Effect Medication

Velcade Intravenous Chemotherapy

Decadron Steroids

Aloxi Anti-Nausea Medication

Zometa Bone Building Medication

Chemotherapy Education at Front Range Cancer Specialists June 8 2011

Attended a Chemotherapy Education session at the Front Range Cancer Specialists McKee Medical Center Cancer Center office in Loveland, Colorado this afternoon. Dr. Moore and his group of providers have offices in both Loveland and Fort Collins, Colorado. It takes us only about 20 minutes to drive from Greeley to Loveland and 25 minutes to the the Fort Collins office.

Loveland, Colorado

Jani and I checked in and waited just a few minutes for our appointment with oncology nurse, Karen. Jani anticipated the appointment would last 20 minutes and I thought it might last an hour.

I'm so lucky to have Jani going through all of this with me!

We went in to an exam room where they had a DVD player set up along with a printed PowerPoint Slide handout on "What is Chemotherapy".

The DVD was produced by the doctors and staff at Front Range Cancer Specialists and not just a generic educational program. The program was well-thought out and nicely produced. The written handout did not have everything that was included in the DVD and I took notes as it played.

Jani had a more difficult time following along than I did because she was unfamiliar with alot of the medical terminology - her head was "swimming" and she is taking her caregiver role very seriously and wanted to get everything down.

Jani made a shopping list of all the things included in the video suggested to help with potential side effects things like mouth irritation, neuropathy, constipation and diarrhea.

After the video was over, nurse Karen came in and carefully went over the highlights of the video. She gave me a calendar schedule of my 1st cycle of chemotherapy to begin on Monday, June 13, 2011 at 1 PM. Each cycle will last 21 days.

If it looks like a lot of medicine - IT IS~~~~

Nurse Karen gave me a handout on each medication and then carefully went over each one.

Chemotherapy Agent #1: Velcade IV (intravenous)

Anti-nausea Agent: Aloxi (intravenous)

Reduction of Inflammation Agent: Decadron IV



Chemotherapy Agent #2: Revlimid PO (by mouth) won't start in Cycle 1 awaiting drug approval by insurance

Bone Strengthening Agent: Zometa IV (given once a month only)



Amino Acid to help with muscle aches and pains caused by chemotherapy Agent: L-Glutamine

Vitamins to help with potential neuropathy (pins and needle feeling in feet and hands) caused by chemotherapy Agents: B6 and B12

We did not leave our Chemotherapy Education until 5:15 PM, making the duration 2 hours 45 minutes in length. It went by quickly for me, however, both Jani and I were tired afterwards. Nurse Karen was caring and thorough.

I've never been good at taking medications, even over-the-counter medications and vitamins. I seem to get more side effects than benefits. So, this ought to be very interesting on June 13th when they load me up with all these drugs - thank goodness for Jani~





Intravenous access port - Bard Power Port Scheduling June 8 2011

Scheduling the surgical procedure to have the intravenous access port or Bard Power Port has not yet happened. They assure me that I can begin chemotherapy on June 13, 2011 with a peripheral intravenous line (IV in my arm or hand) if I don't yet have the port by then. I'm waiting for surgeon, Stefan Pettine, MD's office to call and schedule 1st an appointment in his office and then the port placement.

Beautiful Day for a Spider Dance - Walking the dogs in Greeley, Colorado June 8 2011

Jani and I walked the dogs our usual 2.2 mile route around the Greeley, Colorado neighborhood this morning. Jani is adjusting to the slower pace! We have a great time together and the dogs, Kemmer, Kady, and Zoe LOVE IT~

All of sudden, Jani spied something out of the corner or her eye and JUMPED toward me when I noticed the same thing and JUMPED away from Jani.

Both of us doing the "spider dance" in the middle of the street by a big rubber spider. We are convinced that some homeowner on this corner has a camera trained on the "spider" and comes home at night to have good chortle while watching the video! Really made us laugh afterwards~



My tongue is sick and my taster is off June 6 2011

My tongue has been bothering me for about 2 weeks. It is tender and nothing tastes right. I told Dr. Moore about this. Since, I've been on 2 courses of Z-Pack antibiotics (Azithromycin 250 mg capsules) one taken from April 23 to April 27, 2011 for a sinus infection and the second course from June 1 to June 5, 2011 for sinus again, I might have a yeast infection. However, Dr. Moore is not convinced that it is yeast, but gave me a 5-day course of Diflucan 100mg one per day by mouth to see if it helped my ailing tongue and taste. I started the Diflucan tonight.

My Gift to Dr. Moore - a Shay Railroad Spike from Mackay, Idaho June 6 2011

After my bone marrow biopsy on May 24, 2011, I was struck by how much the bone marrow sample looked exactly like a Shay railroad spike. The former Shay Railroad ran above Mackay, Idaho in the White Knob Mountains. The tracks were put down in 1901 and taken up in 1920. The former railroad bed provides the source of more than 100-year old railroad spikes at times. I brought one of the railroad spikes to Dr. Moore for a paper weight. I think he liked it!



Diagnosis, Staging, and Treatment Plan June 6 2011

My multiple myeloma is officially diagnosed as Stage 1 IGG Kappa Myeloma complicated by two significant cytogenetic DNA chromosomal changes 4/14 and deletion of a part of 13. This combination of chromosomal changes usually predicts an unfavorable prognosis.

However, my oncologist, Dr. James Moore,  is very optimistic and wants to aggressively treat the 80 percent neoplastic cell involvement in my bone marrow at present.

I will have a PET Scan of my whole body this week – results will help in following the improvement with chemotherapy.

I will have a port surgically implanted in my chest this week (they put you to sleep) so they will not have to access my blood via my arms and hands and have a port to give the chemotherapy through.

I will begin chemotherapy on Monday, June 13^th (most probably). It will consist of intravenous Velcade and Decadron. I’ll also be given an intravenous dose of bone strengthening medication called Zometa once a month. The Velcade and Decadron schedule of medications will be intravenous on day 1, day 4, day 8, and day 11 of each 30 day period.

Hopefully, I’ll be taking Revlimid in pill form after my medical insurance approves the very EXPENSIVE drug. The insurance paperwork for the Revlimid could take up to 2 weeks. However, Dr. Moore does not want to wait for the Revlimid to begin the Velcade and Decadron. I would take the Revlimid day 1 to 14 each 30 day period.

These chemotherapy agents do not cause hair loss and are generally well tolerated – mostly make you tired. He said many of his patients on these drugs drive themselves to their chemo appointments.

I will also have to take Acyclovir 400 mg by mouth twice a day to prevent a recurrence of the shingles I had in August 2009. 

I will continue the chemotherapy agents twice a week for 2-4 months (30 day periods) and then have a autologous bone marrow stem cell transplant (where you donate your own bone marrow stem cells for the transplant) at the Anschutz Cancer Center at the University of Colorado in Aurora, Colorado.

My kidney function is fine for now and I have no known fractures.

I will plan to stay here in Greeley, Colorado with my sister, Jani and Robbyn. They are both very supportive. I will have all my chemotherapy treatments in Ft. Collins at Dr. Moore's office and the port  procedure at Poudre Valley Hospital in Ft. Collins.

So, that is what I know for right now. Thanks for your concern.

Here is Team jm at the appointment.with Dr. James Moore -  Jani, jm, and Dr. Nancy White. I'm lucky ro have so much support.

Here is the official bone marrow biopsy results from a lab in California called Genoptix. Click twice on it enlarge for reading.

1st Bone Marrow Biopsy done 24 May 2011 and resulted at GENOPTIX in Carlsbad, California on 3 Jun 2011.

CLINICAL DATA:

60-year-old female with anemia and monoclonal gammopathy. Evaluate bone marrow for multiple myeloma.

Accompanying CBC report date 5/24/11, indicates WBC 3.4, RBC 3.20, Hgb 10.3, MCV 93.2, MCH 32.2, MCHC 34.5, RDW 15.9%; platelets 174 with a differential count of neutrophils 41.3%, lymphocytes 47.9%.

FINAL DIAGNOSIS: Plasma Cell Myeloma with Unfavorable Prognostic Factors

Comprehensive Assessment:

Review of the bone marrow study shows hypercellular marrow with sheets of neoplastic plasma cells seen (approximately 80%) replacing the marrow elements. The plasma cells are, by flow cytometry and IHC staining, kappa light chain restricted. The plasma cells show atypical morphology, and occasional plasma cells show plasmablastic morphology, however, significant plasmablastic cells are not seen on the aspirate smears. Cytogenetics show norma female karyotype. Myeloma FISH shows t(4:14) and deletion 13. t(4:14) is associated with an unfavorable prognosis in plasma cell myeloma.  The presence of these risk factors for plasma cell myeloma should be interpreted in the context of all other established prognostic clinical and laboratory parameter.

Morphology:

Bone marrow aspirate, core biopsy, and clot sections:

-Plasma cell myeloma (approximately 80% marrow involvement)

Peripheral Blood:

-normocytic/normchromic anemia

-mild leukopenia

Flow Cytometry:

Monoclonal plasma cells detected (~20% of the nucleated cells), consistent with plasma cell myeloma.

Cytogenetics/FISH:

Cytogenetic analysis reveals a NORMAL female karyotype without apparent clonal aberrations.

Myeloma FISH reveals ABNORMAL results with t(4:14) and -13. FISH analysis utilizing probes specific for aberrations commonly associated with myeloma including t(4:14), +5, +7, +1 1q, t(11:14), -13, 13q-, t(14:16) and TP53 (17p-) is performed. These studies detect monosomy 13 in 23.5% 947/2000 and FGFR3-IGH @ fusion signals in 12.5% (25/200) of nuclei examined. An extra IGH signal is seen in an average of 9.75% (39/400) of nuclei examined, which supports the t(4:14) findings. The t(4:14) is associated with an unfavorable prognosis in myeloma.  The remaining probes do not detect aberrations in the 200 nuclei/probe examined.

Bone Marrow Biopsy Results June 6 2011

I love Idaho and will miss it June 4 2011

I walked the old Shay Trestle Road this morning with Kemmer. The view of Mackay, Idaho from the Mine Hill is beautiful.

Kemmer on the old Shay Railroad Road

Old Shay Railroad Trestle June 4 2011



My family practice doctor, Eliz Albritton, MD called me today from Colorado. She was checking in to see how I was. She encouraged me to take the refill Z-Pack antibiotics for my sinuses, so I could clear up the postnasal drip I've been experiencing since Easter 2011. It was really nice of her call and show her concern.