Monday, March 29, 2010
Where were you born and raised?
- Detroit, MI
- Flint, MI
- December 2005, age 67, Plasma Cell Leukema, IGG
- Never heard of it.
- 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.
- University of Michigan, with supplemental support at Genesys/Hurley - Flint
- 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.
- 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.
- 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.
- 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?
- 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.
Friday, March 26, 2010
- Specific local legislation is also pending in several states! The 21st Century Cancer
- The Cancer Drug Coverage Parity Act (H.R. 2366)
- ALERT (Access to Life-Saving EarlyDetection, Research and Treatment) Act (S. 717)
- The Access to Cancer Clinical Trials Act (S. 488/H.R. 716)
- Friday, March 26, 7:00 pm EDT USA
- Toll Free: (866) 393-4674
- Conference ID: 56763901
- Ask questions, Raise issues, Hear from other myeloma patients
It's been months since I have had any side effects or issues with treatments. I am currently dealing with a couple of issues that make me realize that on the MM path, remember to count your blessings when things are "normal."
- Lower Back Pain - I was warned of bone pain with the neupogen shots, which I shrugged off after 4 days of taking shots with no side effects. Yesterday was different. I have a shocking pain that comes in waves in my lower back. I have no clue what back labor feels like, but I think this is the closest that I will ever get to it.
- Fissures - Hopefully this isn't too much information for you to take with you into your weekend, my apologies if it is. The only relief I can get from this excruciating pain is when I think of Jerry Stiller's comment in Zoolander: "It stings me like a fissure in my a**". Again, I will never feel the pain of childbirth, but shoot, every morning I am reminded that childbirth is not for me!
Thursday, March 25, 2010
Tuesday, March 23, 2010
- 3/16: NeoStar Catheter placement
- 3/17: Cytoxan - Chemo
- 3/18: Phil doesn't remember this day (thanks Ativan)
- 3/21: Daily neupogen shots begin
- 3/28: Last neupogen shot
- 3/29: Stem Cell Collection (my stem cells), also called apheresis
- 4/4: Christ is Risen, Hallelujah.
- 4/5: Receive Melphalan - Chemo
- 4/6: Phil checks into the hospital for a minimum of 15 days
- 4/10ish: Phil's cells die
- 4/10ish: Phil receives his Stem Cells back
- 4/11+: Phil recovers until Phil is Risen, Hallelujah.
- 2 months later (Take 2): Phil goes through this process again starting with Melphalan.
And here's Cassie's edit to Phil's original post:
To keep it even simpler, I'd just say:
1. They give you drugs to make your marrow over-produce stem cells and push them into your blood.
2. They pull your blood-and-stem-cells out, collecting the stem cells and replacing the blood. (A simple and painless but time-consuming process.)
3. They give you high dose chemo to kill everything.
4. They give you back your stem cells, which will graft back into your marrow, creating a new immune system over the next few months.
Monday, March 22, 2010
Sunday, March 21, 2010
Tuesday, March 16, 2010
Yesterday Phil got his Neostar Catheter placed. Beth has a picture of one on her blog, and Phil may want to show his off later on. We'll see. The cath will allow for easier stem cell collection, blood draws and chemo administration and this is also the site through which the stem cell transplant will happen. He said it's not too uncomfortable... and the creepiness factor is sort of over-ridden by the knowledge that he won't have to get poked so many times every week.
Today is Phil's Cytoxan infusion which is an all-day affair. We were under the impression, through no one's fault but ours, that the Cytoxan would be a simple infusion, we'd go home and life would proceed as normal until collection. However, it turns out he'll be on some heavy anti-nausea meds for a few days afterward and will likely be tired and somewhat out of commission until the weekend. His counts will also begin to drop at that point. We're at infusion right now and Phil received his Compazine, Ativan and Zofran to combat any nausea before it even begins. They just hung his Cytoxan, which will take two hours, and then we'll stay here for hydration well into the evening. Because of all the meds Phil is, in his words, "Soooooo tiiiiiiired." So he's cashed out while I pay bills, eat bagels and catch up on my Pottery Barn catalogs.
Tonight Phil will be sent home with a pump that is connected to his catheter. The pump will infuse fluids into his system throughout the night, and I'll have to wake him up every two hours to use the bathroom, since it's dangerous for Cytoxan to sit in your bladder. I got a tutorial on how to work and troubleshoot the pump since Phil will likely be too sleepy to notice if something goes wrong (which is unlikely). So between that and yesterday's class on how to flush his lines-- which we'll do three times a week-- and change his dressing-- which happens once a week-- I feel like a pro.
I'm heading home for lunch and to try and get the kids down for a nap in about an hour, then coming back to the hospital for the rest of the day. I asked the nurse if they could bring in another bed so I can take a nap too and she just kind of giggled. As if I was joking. Oh well. Thank goodness for free bagels and internet.
Updates to come as events warrant!
Tuesday, March 9, 2010
It was bittersweet.
Our good friend Zak blogged about this very thing recently, and while our journey is far from over and we will reconvene with Dr. J and his trusty sidekick BN after transplant, this marks the end of a significant chapter in the Cancer Book. Induction is done, and we're now entering the next phase. It feels... weird.
Dr. J had wonderful things to say to us and we left, as we always do, in awe of not just his competence and knowledge and determination, but also his compassion for and sense of responsibility toward people suffering from myeloma. Remission is not good enough for him, as it shouldn't be good enough for any of us who are touched by this terrible disease. I respect Dr. J as a physician and also as a person. As my aunt Tweetie would say, he's a good egg.
BN, P.A., is awesome too. I won't say too much about him on here because everything we say on this blog always gets back to him somehow (hmmmmmmm...) and I don't want him to feel uncomfortable. But basically he's single-handedly made the last five months not suck. He's the best of the best and we lub him somethin' awful.
So now we've been turned loose to the bone marrow transplant team. I wonder if they know what they're in for? Cackle, cackle...
I also wanted to mention this article. I'm sure you myelomians (myelomiacs? We really need a cool name.) have seen this but I wanted to post it here for anyone who hasn't yet read it. Because while hope is absolutely necessary, so is the realization that this cancer is not like other cancers and something needs to be done. My kids need their dad and ten or fifteen or even twenty years of remission simply isn't good enough for a 29 year old. Awareness is key, people. As I've said in the past, I'll chill out a bit when spell-check recognizes myeloma as an actual word. So anyway, Kathy Giusti of the MMRF is a rock star and this article is a must-read for, well, everyone.
I am going to actually try and get in bed before 10:00 tonight. I find myself staying up too late once the kids are in bed because the house is just so darn peaceful when the preschoolers aren't brawling. I hate to waste all that quiet on crazy pregnancy dreams. But sleep will be hard to come by soon, so sleep I must.
Pleasant dreams to all of you, and we will update later this week after Phil recovers from his bone marrow biopsy. (He really doesn't mind them. I've never had one but I
Monday, March 8, 2010
- Hamilton, New Zealand
- Waitakere, New Zealand
- June 1st 2001, age 53.
- Fractured ribs, bone pain.
- Bone pain started 6 months prior to dx. I wasn't very pro-active.
- Auckland Hospital New Zealand.
- June 2001: Diagnosed with multiple myeloma stage III IgG kappa.
- June 2001: DVT right calf.
- June 2001 to September 2001: VAD.
- November 2001: Retinal vein thrombosis right eye. (Cleared)
- December 2001: Autologous stem cell transplant.
- March 2002: Interferon maintenance commences (3 years).
- April 2002: Plateau stage commences.
- March 2005: Retinal vein thrombosis left eye. (Cleared)
- September 2006: Plasmacytoma left humerus. Titanium rod prosthesis.
- January 2007 Thalidomide maintenance commences (14 months).
- November 2007: Relapse commenced. IgG rising, bone pain reappears.
- July 2008: Lytic lesion right humerus.
- August 2008: Second autologous stem cell transplant.
- October 2008: Titanium rod prosthesis right humerus.
- December 2008: Second plateau stage.
- June 2009: Second relapse commenced; IgG rising rapidly and 2 soft tissue plasmacytoma on skull, treatment cyclophosphamide and dexamethasone.
- October 2009: Third plateau stage.
- November 2009: 2 soft tissue plasmacytoma reappeared.
- January 2010: radiation to 2 soft tissue plasmacytomas.
- Followed conventional treatment available in NZ at that time. Chemotherapy and possibly an ASCT, nothing else. We still do not have access to Velcade or Revlimid.
- VAD: nausea
- ASCT: Nausea, diarrhea, mucositis, hair loss, dry skin, fatigue
- Interferon: depression
- Thalidomide: Peripheral neuropathy
- Radiation: Fatigue
- Bone Pain
- Seek out other myelpma patients for information. (support group)
- Create your own myeloma support team.
- Create a myeloma and medical knowledge base.
- Maintain a positive attitude.
- The unconditional love from my wife Myra.
- Maintaining a positive attitude.
- Walking away from negative people, negative stories.
- Support from my myeloma friends.
- Reading myeloma survivor stories.
- Taking ownership of my illness and creating "Team Sid" for support.
After being diagnosed... What perspective was changed the most?
- Spiritural. I became a reborn Christian. Why? One question. Death, what happens and where do I go when I die? Myeloma put that question in my face.
No. I did live in a City that was the centre of an agricultural area.
What MM sites or blogs had you found good information from after diagnosis?
These are some of the many myeloma blogs I visit:
- Multiple myeloma for dummies. Phil Brabbs. What can I say?
- Beth’s myeloma blog. Beth Morgan. A myeloma blogger legend, blogging since 2003. Good historical information.
- Planet myeloma. Beth Morgan’s blog roll. A list of links to myeloma bloggers and a link to their latest posting updated hourly.
- Myeloma hope. Don, (Minnesota Don)Excellent information on Don’s treatment, lab tests and supplement regimen.
- Living with multiple myeloma. Pat Killingsworth. Daily postings (over 300) Pat comments on all myeloma matters giving the reader information to make their own decisions
- Beating myeloma blog. David Emerson, David advocates and uses alternative treatments.
- Nick’s myeloma blog. Nicolas van Dyk. Nik is finishing the newer aggressive approach to myeloma treatment. A must read.
- Myeloma Forums
- Myeloma Beacon
Saturday, March 6, 2010
Thursday, March 4, 2010
Wednesday, March 3, 2010
Ocean and Phil were chasing each other around the house after dinner tonight and Iris was still working on her fourth helping of dinner. (This is not atypical.) Iris began chanting, "Go Ocean Go! Go Ocean Go!" Ocean, without stopping, exclaimed, "Thank you, Iris! Your encouragement helps me so much!" And then he actually started running faster.
Aside from the fact that I don't know many four-year-olds who speak this way, it made me think of you all. We run faster when we know there are people behind us.
Lots of mid-week love from us to you.
Monday, March 1, 2010
- Cleveland, Ohio
- Chagrin Falls, Ohio
- 2/14/94- age 34, non-secretory-
- not that I know of
- Broken fifth cervical vertibra
- University Hospital of Cleveland and the Burzynski Research Clinic
- 3/95- five cycles of VAD
- 9/95- 2 cycles of cytoxan
- 12/95- pbsct
- 10/96- local radiation
- 9/97- second relapse-
- 11/97- began antineoplaston therapy
- 4/99- complete remission
- VAD, cytoxan, pbsct was considered standard, aggressive therapy at the time-
- extensive nerve damage, chemobrain, irritable bladder, GI problems-
- cancer diagnosis originally, side effects- I am okay now.
- Life is all about priorities.
- Creating the Galen Foundation, launching beating-myeloma.org has been a tremendous help to me.
- My view of life has changed in that I have changed my priorities.
- I worked in a commercial printing plant.
- MMsupport, Margaret's Corner and beating-myeloma.org of course.