"So what's it like?"

Contrary to popular belief, I'm not 'rock-hard' all the time and I don't feel like I can jump tall buildings. However, I do know that I can swallow gelatin, fish-like substance without breathing through my nose (it truly does work!) You still need to get something in your mouth before you finally do breathe through your nose (or run the risk of tasting rotten, sea-faring, mystical 'stuff'.) I've been consuming the sushi jello for a week now but did miss one dosage one night after a work function where I also (due to others not knowing my situation) went beyond my two beer limit. I'm sad to say I got a hangover from four beers spread out over 5 hours - WHAT IS HAPPENING TO ME?!? Boy, when this is done there will be some heavy training necessary ;)

Always be prepared

DO NOT TAKE THE SHOT WITHOUT HAVING SOMETHING ELSE TO EAT "AT THE READY"!

YUCK!

364 days to go!

...and he has no tastebuds!!!

ewwweueuwwughheuck!!!!

cold - gelatin - sea urchin. it is a jello-shot - you can't 'drink' it - you need to get your tongue in or squeeze it out and then you have to sort of chew it. It's not thaaaat bad but it's not what I would normally taste for breakfast. Only 364.5 days to go!!!

There is a god....

The 'product' is the size of a Jello shot, not a cup of Jello - down two in the morning and start your day - who needs coffee?!?
Pictured here (with a quarter to give you an idea of the size) is my morning jolt. So I take two of these (and don't call the doctor till after 28 days) every morning and every evening. They're kept frozen and you need to take out 4 each night. Luckily my folks have space in their freezer so I can keep the second box there.
The lady that delivered the 'product' was giving me tips, "I'm told that it doesn't taste that good so if you pinch your nose like this "" when taking it may help." I told her I lived in Hong Kong and she said, "oh, then you're used to smells like this." Honest - I can't make this stuff up!
On my last visit I had a bone marrow biopsy, turned in my 24-hour urine test, had a full skeletal xray and did the various bloodwork. I also needed to have an HIV test (required for the clinical trial). The biopsy showed a presence of 60-70% plasma cells (compared w/ the initial of 30-40%) but all other work came up negative (the disease having no impact on my body at this time.) I've sent the reports off to my other doc for his comments and will update accordingly. The other good news is I have to do another 24-hour urine test and will have to repeat that every 28 days. The only other times I've peed in a bottle was during those long car rides after a rugby game - but this one I have to save!
Now on to the sushi-shots! For details, check out this link to the company that makes this lovely concoction. So here are the details:
Supplement Facts
Serving Size 1 Unit (0.6 fl oz)
Servings per container 56 (remember, I get two boxes)
Proprietary Blend 20ml
Sea Cucumber 80%
Sargassum (whole plant) 5%
Sea Sponge 5%
Shark Fin 5%
Sea Urchin 5%
(Daily Value not established)
So I'm imagining this has got to be one tasty treat! But I'll update with another post

Seafood Jello Mix

So I've confirmed with the doctor's at St Vincent's. I go in 4/21to sign all the necessary paperwork and begin the Sea Cucumber Protocol (I'm sure there is a more official name but that will do for now.) All this starts with another 24 hour urine test - this time they gave me two bottles! I'll then get another bone marrow biopsy and a litany of other tests taking place that day. And I should be getting my first supply of Seafood Jello! Unless of course, they are looking to see the test results first.

We temporarily interrupt this program for...SUSHI!

Ok - so everything's changed - but that's a good thing!

Upon my first visit to St. Vincent's the doctors there evaluated everything that was done prior and developed additional questions that they believed may be relevant. My iron seemed to be low; is there internal bleeding causing the iron deficiency and low red blood cell count; I have additions to my 17p chromosome rather than deletions; etc. They considered me "asymptomatic" (the myeloma, though present, is not causing damage or other problems that would normally be present) and were suggesting that we consider monitoring rather than moving forward with the RVD. This came about AFTER my last post. I discussed with DFCI and they talked with SV and I had another visit Wed, 4/8. The general thought process was I was stable and we shoudl consider NOT going on the RVD regimen at this time - and then my blood work came back with a slight increase in the IgA levels (the protein that is causing all this mess), an increase in my Total Protein count and most importantly a spike, for the first time, in my calcium levels. This is of concern in that if the myeloma is "eating away" at the bone's themselves (one of the symptoms of active myeloma) then the calcium from the bone would be released into the bloodstream. However, there could be other reasons for an increase in calcium levels.

I was instructed to lay off my multi-vitamin, stop the VitD intake (supplemental) and stay away from dairy products and have another blood test on Friday, 4/10. When I arrived for that blood test I was informed I would be having labs (bloodwork) as well as treatment. When I asked "what treatment" I was told chemo - which of course put me in a tailspin - I had gotten no phone call, WTF was going on?!? Bottom line, if my calcium levels were still elevated they were going to put me on Zometa (a bisphosphonate bone strengthener). That was the treatment they were going to perform. Well, this caught me slightly off-guard as I couldn't get that answer until I was in the treatment room. And when they do labs, if you're having treatment they can't take blood from your arm, they need to do it from your hand (which is good as the same lady had left a beautiful blue bruise on my arm from Wed.) It wasn't painful but it was bizarre.

So, rather than typing out everything that occurred, I've just cut/paste the email I sent out to family as it describes my next steps and explains the sushi comment above - thank god I love Japnese food!

I went to St Vincent’s today for a follow up blood test. They were testing specifically for calcium and total protein as my visit on Wed had a spike in both and that was the first time my calcium level had risen (a flag as it could mean that the MM is now starting to infiltrate the bone and the calcium is being generated by the degeneration of the bone). Bottom line, my calcium level dropped back to normal and my protein dropped as well. If the calcium level had not dropped below 10.5 (it was 10.7 compared to 10.0 today) then they would have immediately put me on the Zometa (bisphosphonate, a bone strengthener). Since it dropped to 10 there was no concern.

Dr. Jagannath’s opinion is that I am asymptomatic (not showing any negative effects of the MM). He is suggesting there is no immediate need to begin the RVD regimen (chemo) at this time. They currently have a clinical trial they are implementing, more details on that below. I traded emails with Dr Richardson at DFCI and he’s in agreement with Dr. Jagannath with the caveat that we are on a conservative leash – should any of the numbers start spiking we go immediately on the RVD regimen (which is what Dr Jagannath stated.) Additionally, Dr Richardson asked that I get on the Zometa as a precautionary measure (which Dr Jagannath had also suggested).

The clinical trial they are implementing involves an extract of Sea Cucumber, Sea Sponge, Sea Urchin, Shark’s Fin and a sea plant (all from the Pacific Ocean). Apparently this extract has been around for years but never officially studied. Dr Jagannath has two patients that have been using it (with good results) so they’re implementing an initial protocol with 20 patients to see if the results are such that they justify a full fledged clinical trial (multiple locations, many more patients, placebo’s, etc.) Apparently the extract has been successful in fighting back the MM disease so they’re studying the effects in the same way they’ve studied Green Tea and Vitamin C. Additionally, the protocol will start with another bone marrow biopsy which will just give us another, more detailed look, at where I stand currently (and can compare against the base-line reading done early October.) The study is a year in length and involves my taking (orally) two units of this “Sea Goo” each morning and evening. A unit is about the size of a small jello container (and apparently you slurp this up like jello as well – but I’m guessing this only comes in sushi flavor and not grape or cherry!) I will have tests run each month to monitor the impact of the extract and will need to avoid supplements that may counteract and/or impact the extract (Vit D, Vit C, Green Tea, etc.)

Bottom line, results of everything are good! I still have MM but I’m stable and not being impacted by the disease. The protocol they are implementing will either a) do nothing or b) have good results in that it pushes back the disease from where it is today. The other advantage of the protocol is that I will be monitored from a clinical perspective so my numbers, etc will be watched closely as they are trying to monitor the effects of this extract on my disease. Should, at any point, the numbers start moving in the wrong direction I will be dropped from the protocol and will start on the RVD.

What’s also great about this, if it works, then I’m not having any strange drugs in my system and I won’t be impacted by this pain in the arse disease come August (and the Beach House!) Lorri also weighed in and agrees with the consensus.

So – on to the sushi platter!!! I’m reaching out to St. Vincent’s tomorrow to schedule my first visit to sign the necessary paper work and schedule the initial tests and biopsy. I’ve yet to find out how this impacts my ability to play rugby (guessing that story is still the same) and my ability to consume that fabled mother’s milk (Guinness – also guessing I’m limited to my 1.5 pints/week.)

Sorry for the drawn out email but wanted to get everyone a quick update on where things stand. Let’s hope the power of the Sea Cucumber works well – I may get out of this without becoming bald!

The Next Steps

So now's when the fun starts!

Met today with the folks at St. Vincent's. Where I will be looking for direction from Dana Farber it looks like I will be doing the implementation at St. Vincent's. They confirmed what we already knew and we discussed next steps which could start as soon as 2-3 weeks.
The Process: RVD - Revlamid, Velcade and Dexomethazone (sp?) for four cycles is what's being initially outlined. A Cycle is basically a month. Revlamid is an off-shoot of Thalidomide (the sedative that was originally given to women w/ morning sickness only to cause births of children without appendages - sorry - that was kind of gross). Bottom line, Revlamid, in conjunction with Velcade are very useful in pushing back the issue I'm facing, Myeloma, and work better than Thalidomide due to a chromosomal make up of mine (17p apparently is abnormal). In addition to this Dexomethazone (a steroid) is used and the three drug cocktail will purportedly push down my plasma cell myeloma levels to a degree where harvesting would be optimal. The intention is to kill as much as possible (w/o killing me of course) so that my t-cells can then be harvested resulting in a collection that has as little of the damaging antibodies as possible. This cocktail will help achieve that reduction and they expect this to last approximately 4 cycles (4 months). Side effects of these drugs are minimal - worst piece is 'neuropathy' or loss of feeling in fingers and toes - this can be controlled and drug amounts reduced to make sure this is temporary. Beyond that the steroids are supposed to keep me extremely energetic (and will potentially make me gain extra weight - let's hope those Perfect Pushups and Pullups are being actively pursued!) Only other aspect in which we need to worry is the revlamid - this is derived from Thalidomide - there can be absolutely no potential for pregnancy during this time as results will only be bad. Nuff said (and we're not looking for anything further!)
Harvesting: This process can take as many as 6 days and they will attempt to harvest for at least two, potentially three transplants ("...and if you act now...we'll throw in another harvesting at no extra charge!") This will involve me having a catheter in my neck for the 6 day time frame, visiting St Vincent's for approximately 2 hours per day while they give me something to "rev up the t-cells" and then extract. All of this is out patient.
Transplant: The transplant process (currently only considering transplant with my own cells) is also outpatient. But this is where the C word fits in it's true form. Prior to the transplant they will hit me with melafan (sp?) at an extremely high dosage that will essentially eliminate everything left in my body remotely resembling myeloma. On day one they will transplant with my own cells (which we had previously harvested and placed gingerly in the freezer's ice cube trays). I believe this process will be a few days for the transplant and about 10-14 days for my body to be back up and functional. Add about a month and half more and I should have a full head (of hopefully not red) hair to boot! Again, all of this is out patient
The benefit of the transplant, versus continuing on the cocktail and keeping a level of remission, is that the cocktail will only work for so long (like having just the right number of tequila shots where you've drunk yourself sober!) The transplant should give me the ability to go off the drugs completely and live some semblance of a normal life. We will always have to watch for it to recur but the potential is that I shouldn't have to worry about it for 1-3 years. We may be looking at a potential tandem transplant (a second transplant happening w/in one year of the first) but only if something is recurring. So all said in done, I could be in that position in about 6 months. Unfortunately, I don't know if that means I can have rugby in the spring (next spring) but we'll play that by ear.
"Alo" transplants - my brother is really the only one that has a reasonable chance for a match (and it's only 25%). However, some of you have mentioned potentially being tested and there is a registry (I'll have to get a link) and you're more than welcome to put yourself on the list. The chances of it matching with me are about as good as my scoring a try (in any season!) but there may be someone else out there that you don't know that could benefit - I'll leave that decision to you!
So that's all I have for you now - I should be getting my Revlamid soon and then the fun starts, expect it to start in the next three weeks. I've still limited my alcohol intake to the requisite 2-3 units per week (and boy they taste wonderful!). I can't wait till touch rugby starts and till I can have four beers in a row!
Thanks for reading!

The Obvious

In Case you haven't gotten the basic message here...if you haven't had a general physical in the last 2 years (or in some of your cases, 10 years) then get your ass to a doctor - get over the "moooonnnn river" - and get it done!

I caught this before anything serious has really happened. It's sh*tty news but I caught it early. I know people that haven't caught this until they were in a middle of a marathon and two of their vertabrae compressed and he fell like a brick (a brick in massive pain!) Better to learn what's going on now than wait till something happens and then find out it's a truckload more serious than you thought.

Go to the doctor - EVERY YEAR! Tell 'em I sent you!

Telling Friends

Ok - I've been dealing with this since late-October and have yet to really move forward on anything. I feel like I'm moving in the right direction now, having decided to work w/ Dr. Richardson/DFCI. But until now, I've only spoken w/ family, key people at work and a few, long-distance friends. This weekend, over beers and a friendly card game, I told the immediate rugby family, "I've got bad news and I've got worse news...."

Which brings up one of the tough parts (and the purpose of this space): how do you tell people and how do you explain everything.

You balance the decision to tell with the "telling" you'll have to do afterwards explaining all details as if you are the expert (even though you're just learning most of these things now.) It's not that you don't want to tell but when is the right time, how do you start the conversation and what reaction will they have? Playing cards, having beers, break in the game, break out the vodka red bull and have at it. Perfect opportunity - kind of changed the mood of the night though! But I don't remember much after the vodka (that had a splash of red bull!) Bottom line, you don't want to email someone - in some cases you can only say it over the phone - in some cases you're introducing this after "how were your hols?" There's no good time to break this kind of news and I think most people get it. But then you have to explain - and that just gets tough.

Let's take a step back - at this point I've got nothing wrong with me. Yes, I have cancer and yes it's NOT good but it's not actually doing anything to me yet. I still have to do something but at least it's not causing problems. So a lot of my talk, compared to somone that's already gone thru their transplant, done the chemo thing, etc.; is whiney piddlesh*t! That said - everyone starts somewhere. This is my way of saying, "this site is going to do a better job explaining what I'm going through, what's happened and what are the next steps."

So the bad news was I'm not playing rugby this season - and to me that's a beyotch! I'm not really worried about the disease. I know I'm going to fight it and that I'll be fine - can't say it's as strong as knowing I was going to have 1 boy and 1 girl but I'll take what I can get. But rugby was the one thing that actually kept me active, fit (i should put that in quotes) and young. Taking that away is a pain. I know plenty of people that have retired at the ripe old age of 38 or younger. But I played with a gentleman in Hong Kong who was 66 and I said then, "that's what I want to be doing!" Who knows - it's a good goal!

And so you want to help - can you find a cure for this? That would be a great help! But seriously, if you want to help, let me know. I don't have anything but when I know there's something you can help with I will definitely give you a ring. Beyond that, my family network helped identify doctors, hospitals, etc. At this point I just need to get on with this and get rid of it! I don't know how you can help beyond one thing:

Don't treat me any different - I'm still me. I can't drink as much (if you call 1.5 pints a week even a drink!) but that doesn't mean I can't live vicariously through you! At some point I will be a wreck - then don't come near me if you have a cold or some type of nasty illness. Till then, talking, laughing, joking about this mess is the best medicine.

I need to crash now - I've read this and re-wrote it once - not going to bother doing it again so if I've said something to offend it wasn't intended.

As for help - I would like everyone's help - I just don't know how you can help right now. Thoughts are good, prayers are fine - fruit cake...let's send it around as a test for 6 degrees of separation - how long before it reurns to you? Seriously though, there's nothing you can do. Should a need arise and you can fill that need, bottom line, you'll be called. Otherwise, all I can ask is to realize I haven't changed - will be putting up w/ a lot of sh*t over the next year or so but haven't changed - meaning, don't treat me different. I can't play rugby, and that's killing me. I can't drink more than 3 units of alcohol a week (1.5 pints mate - 1.5 pints!) and that's killing me. I'm not on oxygen, I'm not in a wheelchair, I'm still me and just want friends there and things as normal as they can be for this juncture in time.

Again, I apologize if I sound like a whiner/whinger/mr pissypants! I'm not like that but the whole concept of telling people is a double edged sword. I'm not holding out as I don't want to tell YOU - it's the whole process of telling that's a pain. But that concept has now been talked to its fullest. Many thanks for listening and cheers for now.

Timeline

The following is a rough timeline of what happend and when.
9/4/08 - annual physical (Dr. Morledge) w/ bloodwork - identified total protein level of 9.2. Doc proceeded to ask if I was taking any supplements, am I having any bone pains, etc. This blood spike (and the recurring spike as we move forward) was the first identifier that something was going on. The protein spike ended up as being an MGUS (monoclonal gammapothy of undefined significance).
9/24/08 - repeat blood work - total protein level 9.0
9/24/08 - frantic call to family doc (Dr. Ayers) who opened up a wealth of knowledge and details from a friend's (a very educated friend's) perspective.
10/2/08 - referral to Hem/Onc (Dr. Spaccavento) - bloodwork identified protein level of 9.4
10/6/08 - 24 hour urine test - no protein present, nothing alarming.
10/11/08 - skeletal study (x-ray) done - nothing of specific pertinence reported
10/21/08 - bone marrow biopsy done (Dr. Spaccavento) - general take - 30-40% of plasma cells identifying as plasma cell myeloma or multiple myeloma
10/21/08 - start the calls to family - the "network" gets started and I've got contacts at all the major health/cancer centers worldwide - gotta love the network!
11/24/08 - Cornell Weill - Dr Niesvizky - consultation
12/15/08 - Sloan Kettering - Dr Hassoun - consultation
12/16/08 - PetCT scan done at Lenox Hill Radiology - nothing specific identified in report
1/12/09 - Dana Farber Cancer Institute - Dr Richardson - consultation

• identified increasing anemia rate
• identified chromosomal issues w/ 17, 13 (not brought up by anyone else)
• noted potential thinning of bone in sacrum and wanted to evaluate node on thyroid to identify if that may be causing any bone thinning.
• suggested protocol at DFCI but can't participate due to distance
• recommended starting RVD (Revlamid, Velcaid and Dexomethozone) off protocol.
• want to check w/ Dr Jagganath (St Vincents) to see if he has a protocol in place using RVD as a backbone. Setting appt w/ Dr Jagganath.

1/21/09 Meet w/ Dr Spaccavento - need to schedule MRI (look at spine, pelvic region and saacrum). Also got scrip for bone strengthener (bisphosphonate). Not yet started that process.
1/23/09 Pneumovax vaccine (protect against pneumonia I believe)
1/24/09 Pnuemovax vaccine kicked my proverbial *ss. "the following side effects may occur..." - they all did!
3/9/09 Met w/ staff at St Vincent's - initial visit, outlined time frame for starting the RVD regimen. Expect process to start in 2-3 weeks.
3/12/09 Call from St Vincent's re; lab results. Levels weren't crazy and they found discrepancies in some of the paperwork (additions to 17p chromosome, not deletions, low iron levels, etc.) and they want to investigate before making a decision. Spoke to Docs at DFCI, still of the opinion that something exists, set another meeting with St Vincent's.
4/8/09 Tests at St Vincents - most levels are normal, spike in protein and first spike in calcium levels. Recheck on 4/10 to consider going on Zometa.
4/10/09 protein back down, calcium in normal limits - consider new protocol being implemented at St Vincents.
4/21/09 Appt at St Vincent's to sign protocol/clinical trial paperwork and have initial baseline tests done: biopsy, 24-hour urine, skeletal xray, bloodwork, etc. Based on these tests I'll be able to start the protocol.
5/5/09 Got first package of TBL-12, the 'product'. Tomorrow I begin taking the sushi-shots!
6/2/09 first month review, bloodwork, check posting from 6/3/09 for details.
7/15/09 First time getting Zometa - bone strengthener - hit me like a truck!
8/10/09 DFCI follow up visit and IGA counts hit 4k for first time.
9/21/09 SVCCC follow up visit and IGA counts hit 4k again
10/19/09 follow up visit at SVCCC - although IGA was down to 3.8k TotProtein and Calcium both spiked - moving to an RVD regime

10/30/09 Begin Cycle1 of Revlimid, Velcade and Dexamethazone.

11/20/09 Begin Cycle2 of RVD - massive drop in IGA and Lambda numbers - into normal as of Cycle2

12/11/09 Begin Cycle3 of RVD

1/1/10 Begin Cycle4 - only VD this time in prep for harvesting

1/29/10 Start of harvesting - take Cytoxan

2/3/10 Neupogen injections begin - carry on through 2/7/10

2/5/10 surgery to insert catheter for harvesting

2/8/10 harvesting begins - collect 9mm t-cells in first day (target 10mm). Two days of harvesting total. Also, cold from that weekend develops into a light fever, spend night at SVCCC to get antibiotics and monitor to make sure it doesn't develop into Pneumonia.

2/13/10 hair begins to fall out - finish the job on 2/14/10 with my clippers - now bald!
3/3/10 neuropathy still bothering me (apparently from the Velcade).  Been taking Lyrica, added Nortriptyline and was given a pain med, Delaudid, to assist.
3/8/10 Started Maintenance cycles consisting of Rev (25mg)/Dex(20mg), 21 days on, 7 days off.  Got off the Delaudid as soon as possible - making me too ditzy!  Keeping on Lyrica and Nortrip - see posts for details
5/3/10 Started 3rd cycle of maintenance, dropped Dex to 10mg.  Still having PN issues but no longer pain (more numbness)

A Rugger's Myeloma

My first post....

Late September I went in for my normal annual physical that was about a year late (my bad) and though everything was fine, my blood-work turned up a protein spike that was abnormal. The Doc said to have the blood work done over to check and see if it re-occurs. Sure enough, the spike was still present so he suggested I see a Hemotologist. They had more blood work, the 24-hour urine test, full skeletal survey and finally a bone marrow biopsy. All was fine except for the biopsy. What was an MGUS (monoclonal gammopothy of undefined significance) was diagnosed as plasma cell myeloma with 20-40% plasma cells in the marrow. Luckily (as lucky as you can be having been diagnosed with cancer) none of the other signs are present: no bone degeneration, calcium levels normal, no protein in the urine, etc.

This was in mid-October. Now the search was on for where to go and what to do. I am extremely fortunate to have a high school friend who is a doctor who has been doing an amazing amount of networking and research and has been directing my various steps. Between this doctor and my family network I've been able to at least originally outline my first chapter: finding the doctor/cancer center to take the next step. I've got appointments at Cornell, Sloan Kettering and Dana Farber. Hopefully by the end of December I'll have an idea of what takes place in Chapter Two.

As I mentioned above, my purpose with this blog is just to document and update what's going on as I've not really told anyone but family at this point. When it does start to get out there will be lots of questions, and I can point people here. The rugby tie-in is just that - I play rugby and obviously, when this does kick in, that will end. Hopefully only during the treatment as its my position (currently) that I will be back and playing as soon as possible. I've been playing rugby for 14 years. I'm a forward (number 8 though I did start as a lock) and have found the game of rugby to be one of the truly life defining points. Short of my marriage and my two kids, that has to be one of the most important pieces of my life. I met my wife through the game, I lost nine friends and team mates in the bombing in Bali in Oct '02 - friends through rugby are friends forever. And I've been lucky enough to have played in various places around the world and developed alot of these friendships. I've played with a 66 year old and said, "I want to be like that". This is the first time I've ever doubted that ability - but we'll get through that just like a bad match of too many scrums and backs that just can't hold onto the ball! (had to throw in a backs comment!)

But enough for now - more details will follow but I'm not sure how often I'll post. Just wanted somewhere to get started.