Day 6 Morning Update September 19 2011

I had a pretty good night September 18 in to September 19 2011. I continue to be nauseated and nothing seems to help, but with Ativan and Percocet, I am able to sleep through it. I'm also getting used to the hospital routines every 4 hours, and although I cannot sleep through vital signs, blood draws, medication administration, and twice daily weights, I am able to go right back to sleep afterwards.

They started me on another 24-hour urine collection this morning. My 4 AM blood values are on the way up some from the neupogen shot I received yesterday.

I had a nice email from my Fort Collins oncologist, Dr. James Moore, wishing me well with my stem cell transplant. He is such a nice doctor.

Jani texted me a picture of her walk with the dogs this morning - boy, do I miss that!

Kemmer, Kady, Jani, Zoe September 19 2011

Dr. Han Myint and his following (about 8 other people) all dressed in yellow isolation gowns did "rounds" on me this morning in my room. Dr. Myint asked me if I could do a second tandem stem cell transplant based on how I felt now on Day 6 of my first stem cell transplant. I told them that I could if he thought it would add years to my life. He said he had NOT yet decided if I would need a second tandem stem cell transplant. It was so confusing with all the people in the room, I forgot to ask him WHEN and HOW he will make the determination for the tandem transplant.

Later, the Physical Therapist came in and collected my paperwork on how much I have exercised. He also showed me how to do all of the elastic (non-latex) band exercises and I practiced a few of those. They count all of the things I do for myself like showering and brushing my teeth as exercise too. He left and brought me a 2nd band to use and a new weekly form.

JayJay (sp), the dietitian aka the "Food Police" came to visit with me for a long time too.  She had me show her all of the snacks that I have in the room - some I had to explain were Jani's (like the chocolate candy - since I don't do chocolate at all). She thought it was fine that I was using the frozen Lean Cuisines. She actually thought I was eating less than I am - so, she left feeling okay. They will continue to run my IV fluids at 125 cc/hr until my nausea lets up some more.

Left Eye Irritation - September 10 2011

I contacted Dr. Moore about my left eye irritation and he agrees it looks somewhat red. His suggested that I take Claritin and avoid rubbing it - which I did - already better.

Last outpatient Velcade/Decadron/Aloxi - September 9 2011

I went early this morning to Dr. James Moore's office in Fort Collins. I enjoyed my visit with Dr. Moore, per usual.

After my doctor's visit, I had my last out-patient pre-stem cell transplant chemotherapy with Velcade/Decadron/Aloxi.

My blood counts for today, September 9 2011. I continue anemic (what else is new) despite 2 units of blood last Thursday. On a high note, my platelets are adequate.

 My immunoglobulins G are down at 468 from 539 on August 15 2011 and 743 on July 26 2011 and 3,422 on June 13 201 which is good.

Home by noon. my left eye is somewhat irritated, red, and watering. I don't know whether to be concerned about it or not.

Appointment with oncologist, Dr. James Moore August 1 2011

Saw Dr. Moore this afternoon. We discussed the constipation issue I'm having and he gave me several good suggestions that I will try daily until my pipes are movin' again. 

He showed us my July 27, 2011 Lumbar MRI results with area of bone marrow stimulation. My back pain has resolved for now.

 Dr. Moore said he plans on 5 Cycles of Velcade/Decadron/Aloxi and 4 Cycles of Revlimid prior to my stem cell transplant. I'm just finishing up Cycle 3 of Velcade this week and will finish Cycle 2 of Revlimid on August 9 2011. So, that's the plan.

Dr. Moore is going on vacation and I'm not going to lie, it makes me a tad anxious. He assures me that he has backup while he'll be away in the wilderness.

MRI of back July 27 2011

I went to the Harmony Imaging Center today in Fort Collins and had an MRI of my lower back.

Shari of the Imaging Center used a little lidocaine on my IV site in my left arm and the IV catheter for the contrast went right right in without any pain 1st time. That's important when you've been poked a lot. She covered it with Opsite and I don't think I reacted to the adhesive in it since I have a severe tape allergy. 

I wore headphones which muffled the loud banging marble noise, but no music to listen to. The test lasted at total of 22 or maybe 28 minutes (2 six minute intervals and 1 ten minute interval). They gave me the gadolinium contrast at the very end and I had another 6 minute interval. I had been cold and the IV gallium warmed me right up. The technician warned me that it might be cold on injection and it was. She also said I might feel a metallic taste in my mouth, but I did not. In fairness, my taster has not been right for some time - so, who knows. I have normal kidney function, so the contrast should not be of concern in my case.

Jani drove me to the test and as we were driving home, I had an email from my oncologist, Dr. James Moore indicating he had already received the results of the MRI study.

"MRI was fine, no compression fractures or obvious injury to bones.

Probably a muscular strain/spasm of some sort.

MRI did show bone marrow stimulation, which is what we see commonly with chemo"

I emailed Dr. Moore back that bone marrow stimulation sure caused a lot of pain in me - I just hope the worst is over after the steroids wear off. I get Decadron again tomorrow with my 2nd Chemotherapy of the week.

So, that was really good news as I didn't want anything to interfere with my stem cell collection which is on the horizon. I signed a paper at the Harmony Imaging Center to have the MRI study CD and Report sent to Han Myint, MD at the University of Colorado Hospital where the stem cell harvest and transplant will occur.

Appointment with oncologist, Dr. James Moore and then Chemotherapy Cycle 3 Day 1 July 26 2011

My back spasms continue and Jani got me in to the car again for my appointment with Dr. James Moore as I begin Chemotherapy Cycle 3 of Velcade/Decadron/Aloxi and Cycle 2 of Revlimid. Dr. Moore was very caring about my back pain and said he did not think it was a side effect of Revlimid since it came on late in the week that I was not taking any medications. He wants me to have an MRI of my back to make sure we are not missing something. In addition, I'll start back on anti-inflammatory, Celebrex 100 mg twice a day and add muscle relaxant, Flexeril 2.5 mg three times a day.

From the appointment, we just walk to the back of the Front Range Cancer Specialists area where the chemotherapy is administered. Nurse Robbyn drew hooked up my port with a Huber needle and drew my blood prior to the administration of chemotherapy. I was anxiously awaiting the Decadraon (steroid) as Dr. Moore thought that would help my back pain - and it DID. I was a new woman with NO PAIN. After days of seizing spasms in my back with any movement, this was welcome relief!

I got my fluids, Aloxi, and Velcade and we were on the road - this time pain free by 2:15 PM.

I made email contact with the Dana Godec, RN Transplant Coordinator at the University of Colorado and she will make my appointments there with Dr. Han Myint after my MRI is completed.

Jani sat with me in the chemotherapy room and she is working on the photos of the 150th Birthday Party, but it will take her awhile, so be sure to look back in the blog for more photos on July 22 2011.

Appointment with Oncologist, Dr. James C. Moore July 5 2011

Had an appointment with my oncologist, Dr. James C. Moore today, July 5 2011. As usual Jani attended with me and I had list of questions that Dr. Moore patiently answered. He told us that my EKG done June 23 2011 at Poudre Valley Hospital was normal; my Echocardiogram done June 23 2011 at Poudre Valley Hospital was normal; and my chest x-ray done June 23 2011 at the Harmony Imaging Center was normal.

I told Dr. Moore that I started the 25 mg of Revlimid this morning.

I told him about my GI distress problems and he suggested that I take Prilosec and Zantac in an attempt to control my heartburn issues. Also to take Senokot-S 2-3 per day and Milk of Magnesia as needed.

We were able to change my next appointment with Dr. Moore from July 25 to July 26 which will help with the next Mackay, Idaho trip for the 150th Birthday Party for my father and I on July 22nd in Mackay, Idaho. Now, I just hope the University of Colorado Stem Cell Transplant folks are on the same page. We go to the University of Colorado for an appointment tomorrow, July 6 2011



Dr. James Moore Appointment June 20 2011

I met with my oncologist, Dr. James Moore, before my chemotherapy session today, June 20 2011. We talked about my visit to Dr. Han Myint at the University of Colorado Bone Marrow Transplant Center.

Dr. Moore said he is expecting the myeloma load in my bone marrow to decrease with this chemotherapy I am receiving. He wants me to begin the Revilmid 25 mg by mouth (in the morning) on July 5th which will be the beginning of my 2nd Cycle of Chemotherapy including both Velcade intravenously (4 times) and Revlimid by mouth for 14 days. They have to be careful in their use of Revlimid because it can damage normal stem cells and they want to harvest as many normal stem cells as possible for my autologous stem cell transplant probably sometime in August 2011.

Dr. Moore thinks the 101.2 fever, chills, and headache that I had last Wednesday was related to my tape allergy vs Zometa, Velcade, or any of the other things.

Dr. Moore looked me over and examined my mouth, skin, and abdomen. Per usual, Dr, Moore was nice, caring, and even cooperated today for my blog photo. I'm sure my visit always puts him off his schedule a tad because he NEVER acts rushed and always answers all my questions.

Dr. Moore's assistant made appointments for the pulmonary function tests and echocardiogram that I need for June 27 2011. However, I'll be in Idaho on that date, so, I'm going to call and reschedule them.

Dr. Moore gave me a written referral for Aspen Home Health Care in Blackfoot, Idaho if I would need anything related to my port care while I'm in Mackay, Idaho. Vickie Jo Leavitt Dunn, RN is the home health care nurse for the Mackay area. Now that I have the referral nothing will happen to the port - good insurance! 



Dr. Moore Appointment and PET Scan Result June 13 2011

We saw Dr. James Moore before my 1st chemotherapy infusion. I really like Dr. Moore and he always gives us all the time we need to have our questions answered. He never acts rushed and thoughtfully provides responses to our inquiries.

We told him how prepared we were with Bart and the cooler of food and he said he liked that because he was an Eagle Scout - I liked that about him!

I asked Dr. Moore to look in my right eye because it felt like it had something in it ever since we left post-op for the port placement. He looked and could not find anything. Jani had some eye drops and we put those in a couple of times which helped.

Dr. Moore asked me today about my emotional health and I told him I was fine. He wondered since the poor chromosomal studies (cytogenetics) were mostly the topic of my last visit with him. I told him I was going to see Dr. Myint at the University of Colorado Bone Marrow Transplant Clinic on Wednesday and he was pleased at how quickly his office had gotten me an appointment there. Dr. Moore thinks I have had multiple myeloma for some time.

Despite not wanting to take aspirin because of my prior history of a peptic ulcer, he wants me to give 81 mg enteric coated baby aspirin (ASA) by mouth a try. I will need to thin my blood when I  start on the chemotherapy agent, Revlimid, because it can cause deep vein thrombosis and/or pulmonary embolus.

Dr. Moore gave me a referral prescription to the Rocky Mountain Cancer Rehab Center at the University of Northern Colorado for an individualized exercise program to combat fatigue with my cancer and chemotherapy.

Dr. Moore gave me the results of my PET Imaging that I had done on June 9 2011. Perfectly Normal.

Dr. Moore explained that the dark area on my brain were from using my brain and the other dark area are normally seen in the kidney's and the bladder.

The radiologist who read my PET Scan was Peter D. Koplyay, MD

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 Aspiration and Biopsy for Staging May 24 2011

Dr. Moore was able to get me in for a bone marrow aspiration and biopsy in his office at noon May 24 2011. They do the bone marrow and bone biospy to stage the multiple myeloma which has 3 stages (1 is better than 2, better than 3). They will also do DNA studies for cytogenetics on the sample which will be sent to Califonia. Will not have the results back for 7-10 days and I made an appointment for June 6, 2001 4 PM to get the results. Nothing will happen in the treatment department until the results are back.

Jani went with me. Here we are in the waiting room.

First, they drew more blood and had the results STAT (fast). They had to poke me 3 times (3 different workers) before they got my blood. AGAIN, I look way too happy!

Still anemic, even a little more than last week, however, I think I've had 20 vials of blood drawn since the beginning of all this.

The bone marrow aspiration and biopsy May 24 2011 by Dr. Moore in his office.

They have a small room with a bed that has a soft mattress. Jani was able to wait in the room with me until the procedure began. This the bone marrow tray they used which has the instructions on it just in case - I guess~

Inside the tray from the internet.

The position I was in for the procedure  - on my left side curled up - not uncomfortable at all to be in this position.

Waiting briefly for Dr. Moore to come in to start the procedure.

I listened to my iPod music during the procedure which was only done with local lidocaine at the area to numb it. I was very brave and I did NOT like the procedure at all! If any more are on the horizon for me - I'll insist on conscious sedation.

This next photo is from the internet, but it is exactly what happend to me.

This is my vial of bone marrow.

These are my bone marrow slides.

This is something called the bone marrow clot (it's mine too).

The last part was to get a 1 1/4 inch piece of bone out of my iliac crest. It looks like a Shay railroad spike to me.

My bone biospsy - 1 and 1/4 inch long. While he was getting the bone, YMCA was playing on my iPod - not ENOUGH DISTRACTION though.

Taped me up too much after the procedure - I think they forgot that I have tape listed as an allergy.

Jani, showing me the pictures of the biopsy since I had to lay flat for 20 minutes after the procedure.

We were out of there at 1:10 PM - would have been faster if they'd gotten my blood on the first poke. Dr. Moore's part went flawlessly.

Came home and Jani tried to trim the excess tape over the bone marrow site. Have to leave the tape on for 24 hours. While she was doing this with scissors, she cut my skin and I YELPED LOUDLY~

Tape trim job ala my sister, Jani

I'm glad that is OVER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Dr. Moore, Hematology/Oncology Calls Me at 7:45 AM May 23 2011

Dr. Moore called me and confirmed to his surprise that my blood workup revealed multiple myeloma. I talked to my former boss, Sandy Baird, who was diagnosed and treated for multiple myeloma 12 years ago and her experience gives me a a lot of hope. She relapsed recently, but will begin treatments again next week.

He ordered a skeletal survey and I went to the Imaging Center at Harmony to have the series of 16 head-to-toe x-rays.

Note the new diagnosis: Multiple Myeloma without achieving remission 

The technician at the Imaging Center was so nice to me and the 16 x-rays didn't take very long at all.

1st Appointment with Hematologist/Oncologist May 18 2011

I went to my 1st appointment with the Hematologist/Oncologist, Dr. James Moore, at the Front Range Cancer Center, Harmony Center, Ft. Collins, Colorado.

James Moore, MD

Dr. Moore completed his medical school training, internal medicine residency, and hematology/oncology fellowship at the University of California-Irvine Medical Center.  He is a board certified diplomat in Internal Medicine, Medical Oncology, and Hematology.  Dr. Moore has done a wide variety of cancer research at UCLA, UC Irvine, and the internationally renowned City of Hope Medical Center in California.  He has multiple publications and abstracts to his name, most recently based on chronic myelogenous leukemia (CML).  His professional interests include the hematologic malignancies (lymphoma, myeloma, and leukemia), lung cancer, and genitourinary malignancies (prostate cancer, kidney cancer, and bladder cancer).  He currently is the chair of the Poudre Valley Hospital Institutional Review Board (IRB) and encourages participation in clinical trials.  In his spare time, Dr. Moore enjoys hiking, backpacking, camping, winter sports, and landscape photography. From http://www.frontrangecancer.com/bio_jm.php

Dr. Moore took a history and examined me for enlarged lymph nodes, spleen, and liver - I had none.

Dr. Moore offers something called "See My Chart" online and I signed up for that which will allow me to watch my lab tests as they come back with results.

Dr. Moore wanted more blood to be analyzed and sent me to the laboratory next to his office in the Redstone Building where they drew 11 vials blood. If I wasn't anemic when I went in - I sure was after I left~ Here are the tests ordered on May 18 2011.

I left Dr. Moore's office thinking nothing was really wrong with me and one of the blood tests would reveal my less than varied diet which I could work on to improve my anemia.