Myeloma Mondays #16: John from Oregon

Where were you born and raised?

• I was born in San Francisco. I lived in California until I was 32.

Where do you currently live?

• Hood River, OR for the last 31 years.

When were you diagnosed and how old were you?

• 12/7/2007 – age 61, IGG Lambda. BMB showed 26% plasma cells, IGG was 6600+ with an M-Spike of 4.5

Did you know what MM was prior to diagnosis?

• No.

Is there anyone else your in family with MM?

• No.

What led to your diagnosis?

• Routine physical prompted by anemia, which was detected intermittently at Red Cross Blood Drives over the course of the two previous years.

How many times were you referred before actually being diagnosed?

• None, I received a definitive diagnosis within 10 days of the first blood test.

Where have you received treatment?

• Initial oral chemo prescribed by a local hematologist from Mid-Columbia Medical Center’s Celilo Oncology.
• Then, I went to the Seattle Cancer Care Alliance for a Stem Cell Transplant.

Explain your treatment history

• 01/2008: Started Thalidomide/Dexamethasone
• 06/2008: Completed 5 cycles of Thal/Dex
• 07/07/2008: Cytoxan, Etoposide, Dex – pre-transplant chemo
• 08/25-08/28/2008: High dose Melphalan -- Autologous Stem Cell Transplant
• 08/28/2008 – 03/2010: In remission without any treatment

Why did you or your doctor choose a specific treatment?

• My wife and I did our own research on treatments. Once I began the thal/dex, I asked for a referral to consult with the SCCA. I made the SCT decision independent of my local oncologist. The SCCA has an excellent reputation. I chose to do the SCT while still healthy.

What have been the side effects of the different treatments?

• Peripheral neuropathy from the thal/dex treatment continues to annoy me. I also experienced constipation, fatigue, and emotional ups and downs from these oral drugs.
• Nausea, diarrhea, joint pain, hair loss, chemo brain, fatigue, profound indifference plus aversion to food and drink, from the SCT. Most of this came and went within six weeks; the chemo brain still occurs intermittently.

What has been the hardest thing about your MM journey?

• It disrupted my wife’s and my life, but we rolled with it. For me, it has been an adventure. I am lucky to have no bone or kidney issues – yet.

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• It is a process. Educate yourself about the disease. There are many good options for treatment. Don’t despair, the survival statistics trend in our favor due to incredibly dynamic research initiatives.

How have you been able to stay positive and encouraged in your MM journey?

• Educational resources such as the IMF, MMRF, and LLS are invaluable. In addition, I highly recommend joining a multiple myeloma support group. We are the real experts.

After being diagnosed... What perspective was changed the most?

• This confrontation with my mortality led me to discover deeper levels of tolerance for others and myself. I am at peace with the disease.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

• My Dad was an automotive body and fender man. My Mom was a nurse.
• I’ve played golf all my life – a lot of golf. Also, I worked as a greens keeper for seven years.

What MM sites or blogs had you found good information from after diagnosis?

· Jon Siegel’s Multiple Myeloma Blog was a thorough and positive recounting of his SCT. For whatever reason, it stopped abruptly.

· Beth’s Myeloma Blog does a good job of walking us through her SCT experience. She later facilitated everyone’s access to other bloggers with Planet Myeloma. For humor and social insight, Because I Said So; Margaret’s Corner for integrative and alternative medicine including cat therapy; for imaginative prose I like Lisa Ray; actually, I read them all. Everyone’s story fascinates me.

*Read other Myeloma Mondays by going here.

**To add your story to MM Mondays Story Time copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil

Myeloma Mondays #8: Judy from Flint, MI

Where were you born and raised?

• Detroit, MI

Where do you currently live?

• Flint, MI

When were you diagnosed and how old were you?

• December 2005, age 67, Plasma Cell Leukema, IGG

Did you know what MM was prior to diagnosis?

• Never heard of it.

Is there anyone else your in family with MM?

• No

How many times were you referred before actually being diagnosed?

• None. I was fortunate to have a fantastic internist who insisted on full body x-rays when my ribs still hurt after 6 weeks. MM showed up on the x-rays.

Where have you received treatment?

• University of Michigan, with supplemental support at Genesys/Hurley - Flint

Explain your treatment history:

• 1/2006: 4 day cycle VDT-PACE
• 2/2006: 2 cycles VDT
• 3/2006: 4 day cycle DT-PACE
• 4/2006: VDT
• 5/3/2006: Tandem transplant #1
• 6/2006: VDT
• 8/18/2006: Tandem transplant #2
• 9/2008-9 RVD cycles every 3 weeks
• 2010: Rev, Velcade, Dex and Cytoxan

Why did you or your doctor choose a specific treatment

• I had plasma cell leukemia, where the plasma cells migrate to the blood stream, a very rare and aggressive form of MM. Dr.J. called me to begin immediate and aggressive treatment the same evening he first saw me. An aggressive form called for aggressive treatment. I was in such a daze I don’t think I really understood what was happening. Fortunately he did. This form of MM had a very short prognosis, which I have long passed. Don’t believe any life line prognosis, everyone is different.

What has been the side effects of the different treatments?

• My first round of chemo caused a great deal of nausea, fatigue and hair loss. The second round was much easier without the nausea and less fatigue. My worst side effects are usually stomach problems and fatigue. Post transplant there was loss of appetite for a short time and extreme fatigue.

What has been the hardest thing about your MM journey?

• Accepting that I can no longer do as much as I would like and having to pace myself accordingly and letting other people do things for me.

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• Find a doctor you can trust and have faith in. If your doctor is not a myeloma specialist get a second opinion from one.
• Find a good support group.
• Realize your life will change but many good things will happen.
• Enjoy every moment you can.

How have you been able to stay positive and encouraged in your MM journey?

• The wonderful support of my husband, family and friends.
• Talking with other survivors who deal with the same issues and are positive.
• Exercise.
• Founding a support group to help others.

After being diagnosed... What perspective was changed the most?

• The realization that life is short made me learn to appreciate every thing every day. Try to spend more time with the people I care about.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

• No.

What MM sites or blogs had you found good information from after diagnosis?

• IMF and MM Research Consortium are very good reliable sites.
• The Acor list serve for myeloma tells personal stories and you can sometimes pick up interesting points but you have to be careful because these are not experts.
• I did not look at MM on the computer until after my second transplant and the tough stuff was behind.

***To add your story to MM Mondays Story Time copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil

Cycle #5 Results - RVDD Continues to Dominate

For those who just started following, I have been on a clinical trial to dominate Multiple Myeloma using a four drug combination known as RVDD (Revlimid, Velcade, Doxil, Dex). From what I read and hear the most common protocol these days for newly diagnosed MM patients is RVD (no Doxil). The MMRF funded trial that I am on throws the more old school Doxil into the mix and the results from the 60+ patient study has concluded that everyone has responded to this chemo cocktail.

After Cycle #5, I still haven't achieved Very Good Partial Response (90% reduction), but my numbers are still looking solid and all of my numbers are trending in the right direction. Here they are in Non-Dorky bullet-ed form:

• M Protein was 0.8, now 0.7 [Normal Range: Zero]
  
• IgG was 1120, it's now 806 [Normal Range: 620-1520]
  
• Kappa free light was 10.6, now 8.2. [Normal Range: 0.33-1.94]
  
• Total Protein was 6.6, now 6.5 [Normal Range: 6.0-8.3]

Here is the data in my preferred dorky excel format for M Protein and IgG respectively:





Given the continued success based on my body's response to the chemo, it has been determined that I will move forward with a 7th round of RVDD after the current cycle I am on. The maximum number of cycles is 8, so there is an end in sight. If I end up with 8 cycles, the only issue we run into is that my transplant may coincide with the birth of Child #3. I guess the good news is the delivery room and the transplant recovery room are all connected!

Cycle #4: Test Results are in!

No graphs this time, just more good news. Of the numbers we are tracking and that are closely tied to MM getting dominated, all are trending down...which is the direction we want them to go!

The M-protein is down to 0.8 (3.0 to 1.9 to 1.2 to 1.0, now 0.8). If it falls another half a point I will be in Very Good Partial Response (VGPR), which would be outstanding heading into my first, of possibly two transplants. 

For those MM enthusiasts out there:

• IgG continues to drop, it's now 1120 (was 1350)
  
• Kappa free light was 20.1, now 10.6. The K/L ratio went from 100 to 50.
• Total Protein is 6.6...Perfect! (Was 8.2 at diagnosis which tipped off my hematologist)

People continue to ask how the treatment is going and I can honestly say that going through hell in cycles #1 and #2...read the old posts if you don't remember, has made Cycle #3 and #4 seem like cake. I am now onto #5, which seems to be following suit! 

So what does Phil want to happen next? 

1. I want to see my M-protein to continue to get dominated. What would make me REALLY HAPPY is to see it at 0.3 after chemo cycle #5, but I would probably be pumped to see it at 0.5 as well. Those numbers would encourage me to go after another round of chemo to try to knock this thing out of the park even before my first transplant.
2. I want to see my kappa to continue to drop. These light chains dominate the kidneys and are a key indicator on how the disease is doing. The chemo is working a number of the kappa, so I just ask that it keep receiving the domination!
3. I want to have peace about when to start my first transplant and peace about whether or not to do a second one. There are financial ramifications to two transplants which don't need much discussion on our blog, but just a reality that we can't avoid. One important note is that it seems that both my oncologist and BMT doc may agree to harvest and collect my stem cells after Cycle #5. I still have to do a little more research to understand whether it's better to reduce the M-protein before collection or not. Unfortunately the chemo bombs affect the good bone marrow too, so the docs want to make sure they get enough collection for two transplants. Being young, I don't think that will be a problem and I still need to trend my blood counts (white, red, platelets) to verify that my counts haven't really gone down much during treatment. 
4. I want my Wolverines to compete for a Big Ten Championship again.

Thanks everyone for the prayer, support and such kind words! There's nothing but good news following Cycle #4 and we expect in three weeks when sharing results from Cycle #5 it will be nothing but the same.

Take that IgG! Domination continues...

After having spent a number of hours in urgent care and a couple of extra trips to the infusion center for hydration and additional blood work, I can say all that is overshadowed by the results that are starting to come in following Chemo Cycle #2. I have already explained IgG a little in a previous post, but basically everyone has some level of IgG, which are antibodies that karate chop bad guys in the face. Unfortunately for my body, I have way too many IgG's who aren't doing much in the way of karate chopping any bad guys. As shown in the beautiful excel graph below, we can now say I am back to normal, for IgG levels that is. We will hear either tomorrow or Friday where the M-protein/spike is at (i.e. on its knees awaiting a final blow!).



I feel like everyone deserves a part of this good news because we have had an army of support! From meals, to people dominating bracelets, to taking care of our kids and to praying for us when we don't have the words...nor do we feel good enough or have enough energy to come up with them. So thanks to all and all a good night!

Take that Total Protein!

I know that people discover their Multilple Myeloma through various symptoms like broken bones, big masses where they should not be, recurring infections, etc. For me, three blood clots in two years (1 PE, 2 DVTs) signaled to us that we needed to see a hematologist....or Blood Doctor as I call them. Our Blood Doctor ran the labs and noticed that my Total Protein was near the upper range (8.2), but not too high. For some reason she decided to dig into the number a little bit and sure enough my IgG was 2360; normal being between 620-1520 according to UMHS. This significance of the 2360 wasn't that it was above the normal range, but rather, the issue was that it was above the normal range and I had no signs of illness/infection.



Here's some medical speak from a very non-medical minded person. The IgG (and IgM, IgA, etc.) are good old antibodies that occur in your body that make up your immune system. An elevated IgG would just signal that the immune system is kicked on and the body is following its natural defense system to do some damage (i.e. domination) of the intruders. The problem with my elevated IgG is that there are no intruders....that we know of (I like to think tiny dioxins are at the root of all of this, but I need to raise a lot of money and pay off some smart guy with a PhD to confirm my claim). So my body is pumping out proteins to create plasma cells to go dominate something that they can't find. So they basically collect in my bones, and eventually make it into my blood stream. So calcium from my bones gets pushed out into my bloodstream causing two main problems.
(1) Elevated calcium and protein levels can be hard on the kidney
(2) The calcium that's suppose to be in the bones, is not. Therefore one is prone to bone fractures.

So here is the spectacular news of the day. My Total Protein today was...(drum role please).... 7.6. Normal range is stated as 6.0 to 8.3.

Here is a chart of Phil's Total Protein over the last 15 months, which has finally hit smack dab in the middle of the normal range...hooray for Friday the 13th!



Did you find this post helpful? Please let me know, because I can talk all day on other fascinating topics like chemo side effects, what we learned in Little Rock, and other fun stuff that thanks to Multiple Myeloma I have learned. Please leave a comment so I know you are reading!

Blessings and domination to all,
Phil

M-Spike down a half a point!

After seeing my M-spike on the rise for 6 months I was ecstatic to find out that it has dropped to 2.4 in just over 6 weeks (was 2.9). I am starting to think that coffee accelerates myeloma! I gave up coffee for lent, so in between blood tests I didn't have one drop of coffee.

Also, my IgG is at 3100, which is consistent with my last test. I haven't gotten the full list of results, but the numbers that Dr. J seems to always focus on seem to be coming back more on the positive side; which I guess is considered more on the negative side in terms of disease management :)

Yay.

Got CRAB?

So to dove tail on Cassie's last post I will provide you some other valuable data from our appointment with Dr. J.

I asked Dr. J and our wonderful P.A. what is going to lead me into the "Oh sh** we better start doing something about this disease" category? I wasn't that blunt, but all be honest with my MM readers and say that's where my head has been of late; Cassie's too.

Dr. J first said that the standard protocol is to observe the C.R.A.B. test. My fellow MM blogger Don describes this better than I will ever in one of his blog posts if you want the details. In dummy terms that I can understand is that the CRAB test fails if your bones or kidney start to take a beating; or you show signs of anemia.

Being the numbers guy that I am, the whole CRAB test is helpful, but what about the M-spike, IgG and Light Chains that get so much attention? So I pushed Dr. J to tell me at what IgG levels do we start to say: "It's time to drop a nuke on these guys." In MM For Dummies language the nuke is a simple translation for some rounds of drug therapy to reduce the disease, followed by chemo drugs and the final step of a stem cell transplant; in other words, reduce the suckers, take out the good guys, kill all the suckers and good guys, replant the good guys, hopefully the good guys reproduce and the suckers stay at bay.

Dr. J's answer was 5,000.  Currently my IgG is at 3,000 and showing a steady climb. I plan on pulling all my data points (3 or 4) and charting them for our readers, but I think at diagnosis I was around 1800-2000, but I am not sure.  Assuming a linear progression this time next year I'll be at 5,000. The tricky part is that Myeloma runs its course differently in everyone, so the time and more data will more accurately paint a picture that we can react to. 

In the meantime, we are considering a trip to Little Rock, Arkansas for a week's stay in one of the Center's of Excellence for Myeloma research and treatment resides. Several signs have pointed to Arkansas, so now I just need to call my insurance and confirm that I won't have to sell my first born to pay for an additional opinion.