Seven Years Out - and I am doing OK...

https://youtu.be/Z0GFRcFm-aY

Doctor yesterday said that I am OK... just need another bone survey to make sure that all is well.

So - what did I do today?

Guess...

Now I need a nap...

jc

BE THE MATCH #SWABFACE

Sonofa...

https://ca.news.yahoo.com/biological-bad-luck-blamed-two-thirds-cancer-cases-190103087.html

Hmmm... whom to blame?

Biological bad luck blamed in two-thirds of cancer cases

By By Will Dunham | Reuters – 3 hours ago

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By Will Dunham

WASHINGTON (Reuters) - Plain old bad luck plays a major role in determining who gets cancer and who does not, according to researchers who found that two-thirds of cancer incidence of various types can be blamed on random mutations and not heredity or risky habits like smoking.

The researchers said on Thursday random DNA mutations accumulating in various parts of the body during ordinary cell division are the prime culprits behind many cancer types.

They looked at 31 cancer types and found that 22 of them, including leukemia and pancreatic, bone, testicular, ovarian and brain cancer, could be explained largely by these random mutations - essentially biological bad luck.

The other nine types, including colorectal cancer, skin cancer known as basal cell carcinoma and smoking-related lung cancer, were more heavily influenced by heredity and environmental factors like risky behavior or exposure to carcinogens.

Overall, they attributed 65 percent of cancer incidence to random mutations in genes that can drive cancer growth.

"When someone gets cancer, immediately people want to know why," said oncologist Dr. Bert Vogelstein of the Johns Hopkins University School of Medicine in Baltimore, who conducted the study published in the journal Science with Johns Hopkins biomathematician Cristian Tomasetti.

"They like to believe there's a reason. And the real reason in many cases is not because you didn't behave well or were exposed to some bad environmental influence, it's just because that person was unlucky. It's losing the lottery."

Tomasetti said harmful mutations occur for "no particular reason other than randomness" as the body's master cells, called stem cells, divide in various tissues.

Tomasetti said the study indicates that changing one's lifestyle and habits like smoking to avoid cancer risks may help prevent certain cancers, but may not be as effective for others.

"Thus, we should focus more research and resources on finding ways to detect such cancers at early, curable stages," Tomasetti added.

The researchers charted the cumulative number of lifetime divisions in the stem cells of a given tissue - for example, lungs or colon - and compared that to the lifetime cancer risk in that tissue.

Generally speaking, tissues that undergo more divisions - thus increasing the probability of random mutations - were more prone to tumors.

The study did not cover all cancer types. Breast and prostate cancer were excluded because the researchers were unable to ascertain reliable stem cell division rates.

(Reporting by Will Dunham; Editing by Mohammad Zargham)

Learn the Terms and Acronyms of Myeloma

http://myeloma.org/IndexPage.action?tabId=1&menuId=323&indexPageId=335&parentMenuItemId=323&categoryId=-1

• about myeloma

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Learn the Terms and Acronyms of Myeloma

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Guide to Terms and Acronyms

GLOSSARY OF TERMS & DEFINITIONS
	Everytime you come across a term you do not understand, check the glossary.

---

Guide to Drug Names
	What do carfilzomib and PR-171 have in common? They are the same drug! Between the original name, the generic name and the brand name, it is hard to keep myeloma drugs straight. Here's a handy guide put together by IMF Medical Editor Debbie Birns.

---

ACRONYMS
	VAD, VAMP, DT-PACE...Is your head swimming from all the acronyms being thrown around? We are here to help.

Why are they criminalising Bone Marrow reimbursements?

http://blogs.law.harvard.edu/billofhealth/

Wrong, wrong, wrong!

Sorry, but this is what happens when anonymous paper pushing robotic bureaucrats make decisions via wikipedia page insights.

Outlawing a process because it didn't exist when some law was passed in the '80s proves that government only HINDERS medical science, and can not possibly help.

I will just give it to you full bore...

jc

HHS Proposes Rule to Amend NOTA, Nullify Flynn v. Holder

Posted on October 4, 2013 by Meyer Michelle

On October 2, in the midst of the government shutdown—either HHS somehow managed to convince itself that the rule was “necessary for the protection of life” or, more likely, it had already been scheduled for printing—HHS quietly published a Notice of Proposed Rulemaking. The proposed rule would effectively moot the recent Ninth Circuit case ofFlynn v. Holder by criminalizing the compensation of bone marrow donors, even when the life-saving stem cells are extracted through a newer, minimal risk procedure. In this post, I’ll explain the medicine, the Ninth Circuit’s decision, and what HHS proposes to do in response. In my next post, I’ll have some reaction to HHS’s policy arguments, about which I’m skeptical, and perhaps a few thoughts about where plaintiffs might go from here.

Section 301 of the National Organ Transplant Act (NOTA) of 1984 criminalizes the transfer of “human organs” for “valuable consideration.” Reimbursement of reasonable out-of-pocket expenses associated with travel and lost wages are okay—as are, since the 2008 amendment of NOTA, paired living donor chains—but any other “valuable consideration” that might incentivize sources of organs is not. Under NOTA, as amended,

‘human organ’ means the human (including fetal) kidney, liver, heart, lung, pancreas, bone marrow, cornea, eye, bone, and skin or any subpart thereof and any other human organ (or any subpart thereof, including that derived from a fetus) specified by the Secretary of Health and Human Services by regulation

(emphases added). HHS has since added to this list “intestine, including the esophagus, stomach, small and/or large intestine, or any portion of the gastrointestinal tract.”

So-called “bone marrow transplants”—in reality, infusions of hematopoietic (blood) stem cells (HSCs)—are often life-saving procedures for those with, for example, leukemia or aplastic anemia. (See these sobering statistics compiled by the Institute for Justice, which represented the plaintiffs in Flynn.) When NOTA was passed, the only way to obtain HSCs was through bone marrow aspiration using a long needle thick enough to suck liquid marrow directly from the donor’s pelvic bone. HSCs are then harvested from the marrow. The procedure is done under general anesthesia and so the donor is subject to the usual risks of anesthesia. Although the donor can return to usual activities in two to seven days, discomfort may linger for up to two weeks..During the past twenty years or so, however, a new method of obtaining HSCs has emerged—apheresis—that avoids the need to invade the bone for marrow. (Kim Krawiec had a helpful post a while back with short videos thatexplain the differences between the two methods.) Today, something like two-thirds of HSC donation occurs through apheresis (traditional aspiration is medically indicated in some cases). Using this method, the donor receives five daily injections of a drug that accelerates blood stem cell production and coaxes the stem cells to move from the bone marrow into the bloodstream, where they are called peripheral blood stem cells (PBSCs). On the fifth day, the donor sits in a recliner for up to eight hours while blood is drawn from one of her arms, recycled through an apheresis machine that harvests the stem cells, and returns the remaining blood to the donor in her other arm. Possible side effects of the drug in the five-day run-up to the procedure include headaches and bone or muscle aches. After harvesting, the donor can return to her normal routine in one or two days, and complications are, according to the 9th Circuit, “exceedingly rare.”

Still, insufficient numbers of willing, compatible donors (there are just four blood types but millions of marrow cell types) exist. Those in need of transplants who have diverse genetic backgrounds, such as African Americans and those of multiple races/ethnicities, are especially difficult to match.

In Flynn v. Holder, a group of plaintiffs challenged the ban on compensating bone marrow donors. Plaintiffs included parents of children with leukemia and aplastic anemia; a parent of mixed-race children; and MoreMarrowDonor.org, a California nonprofit that wanted to test a pilot program in which it would offer bone marrow providers $3,000 awards in the form of scholarships, housing allowances, or gifts to a charity of their choice. They pressed two arguments before the Ninth Circuit—one based on the Equal Protection Clause, and one based on statutory interpretation. (A third argument, that the ban violates substantive due process, was rejected by the district court by fairly dubious analogy toAbigail Alliance, and plaintiffs did not raise it on appeal.)

Plaintiffs’ first argument was that NOTA, as applied to MoreMarrowDonor.org’s pilot program, violates the Equal Protection Clause by distinguishing, without rational basis, blood, sperm, and eggs (which do not come within NOTA’s definition of “human organ,” and donors of which may be compensated) and HSCs (donors of which may not be compensated under HHS’s interpretation of NOTA, regardless of the method of procurement). Plaintiffs argued that HSC donors—like blood and gamete donors, but unlike solid organ donors—are exposed to little risk and quickly regenerate what they have donated.

As applied to HSCs donated through aspiration, the court held that NOTA’s compensation ban might have any number of rational (if imperfect) bases and, therefore, does not violate the Equal Protection Clause. However, the court avoided the constitutional question as applied to HSCs donated through apheresis, holding that “the statute contains no prohibition.” According to the court, Congress could not have intended for NOTA’s reference to “bone marrow” to encompass the harvesting of HSCs through apheresis (that is, PBSCs), because that procedure did not exist in 1984.

As for what the statute implies about apheresis-derived PBSCs, the question came down to whether PBSCs should (as the government argued) be considered “bone marrow” or a “subpart thereof,” both of which are covered by NOTA’s ban, or (as plaintiffs argued) “blood,” which is not. The court sided with plaintiffs, finding among other defects in the government’s argument that it “proved too much”; after all, if HSCs are “part of” bone marrow because they are formed there, then so are the white and red blood cells that the government concedes fall outside of NOTA’s scope. In short, the court found,

All that differentiates the blood drawn in peripheral blood stem cell apheresis from the blood drawn from a compensated blood donor, other than the filtration process, is the medicine given to donors in the days before the blood draw to increase hematopoietic stem cell secretion.

In its petition for rehearing (here’s Kim again), the government raised a fairly weak new argument (Kim again) based on the fact that Congress—in an entirely different Title of the U.S. Code, pertaining to entirely different issues—defined “bone marrow” to include PBSCs. The court rejected the government’s petition for rehearing but did amend its opinion to reflect its rejection of the state’s new argument. The court concluded:

We construe “bone marrow” to mean the soft, fatty substance in bone cavities, as opposed to blood, which means the red liquid that flows through the blood vessels. The statute does not prohibit compensation for donations of blood and the substances in it, which include peripheral blood stem cells. The Secretary of Health and Human Services has not exercised regulatory authority to define blood or peripheral blood stem cells as organs. We therefore need not decide whether prohibiting compensation for such donations would be unconstitutional.

In its notice of proposed rulemaking this week, of course, HHS seeks to use just this regulatory authority. (Comments, by the way, are due by December 2, 2013.) The agency proposes to “explicitly incorporate hematopoietic stem cells (HSCs) within peripheral blood in the definition of ‘’bone marrow,’ so that the prohibition on transfers of human organs for valuable consideration applies to HSCs regardless of whether they were recovered directly from bone marrow (by aspiration) or from peripheral blood (by apheresis).”

As I said, in my next post, I’ll talk about the policy arguments for underlying HHS’s use of its regulatory authority. They include the usual suspects—commodification, coercion of PBSC vendors, exploitation of the sick, and concerns about compensation crowding out altruism and incentivizing vendors to conceal infectious diseases.

Quick update

BMT doctor said that I am still OK, and I had an appointment with Dr. Lee and he said that all the tests are still OK.

Cramps - Still happening, and they kept me awake a few times recently.

Thyroid - They changed meds on me.  Not the amount (still 100 mg), but the manufacturer.  Have I seen a difference  Yes and no.  They want me to retest in a few weeks to make sure.  However, I am getting some weird hot flashes and stuff.  Joy.

The Back - Had a bad day Sunday... So bad that I cut our trip to Disneyland short (after riding Radiator Springs Racers).  It started in the middle of the night.  Must have slept funny.  Two days of "on my back" it seems like all has reset... for now.

Still looking for the magic bullet when it comes to the cramping issue though.

Gotta go run kids...

jc

Very important day

Day Zero + 1460 (4 years) and counting.

S#!% Cancer Patients Say

This kid is brilliant - they should show this at the City of Hope and once an hour down in the chemo room at Lakeview...

jc

City of Hope BMT reunion # 4

I love going to these, but it does take a toll.

I didn't see many kids this year, that always weighs heavy on me... So they were either in another section, or not as many kids are getting cancer.

I pray the latter.

Again, I met more WONDERFUL people there.  Seems like there are more and more Multiple  Myeloma patients surviving longer and longer.

Add to that, my two favorite Bone Marrow Transplant Doctors:

I even had an extra cupcake.  Bern would have wanted me to.

(sigh)

I need a nap...

jc

Coming up on Three Years!

This time, three years ago, I was packing to go to the City of Hope to have my bone marrow chemo-ed away and my wonderful stem cells come in to help rebuild my immune system.

What a wonderful world we live in.

jc

Still not focused on blogging...

Just been scampering around, seemingly doing nothing, but getting some things done.

The bathroom remodel is 98% done:  I can shit, shave and shower in one room!  The door needs to be replaced, and a threshold put in, but it works!

Went to the BMT reunion @ COH.  Had a nice time.  Sat with two other old guys that also had Multiple Myeloma.  We swapped stories (never trust a fart), gave advice (LOTS of water for cramps), and made each other feel OK to be surviving.

Didn't see many kids this time, which doesn't tear me up as much.  Old guys with cancer don't phaze me... Kids with cancer rip me open.

After that we went and had the Daddy - Daughter dance at Acacia School.  Had a good time, and only Caitlyn destroyed her dress with chocolate.

A busy life is a happy life.

I guess.

gotta take a nap - with the dogs.

jc

Canceled!

Well, looks like I have one more drug to check off my list.

Just as I was getting ready for my 2+hour Aredia infusion, they called an put it on hold. Great timing, Dr. Lee!

What this means is that either my bones have strengthened enough to stop the bone boosting drug, or the effectiveness of it is wearing off and damage to other organs is showing up.

When I went for my bone density screening, the guy couldn't figure out where my vertebrae started and ended. I don't think that's a good thing.

Either way, my afternoon is now clear...

I need a nap.

jc

Bone Marrow report

YOUR MARROW IS CLEAR WITHOUT MYELOMA.

FINAL REPORT:
1. MILD PLASMACYTOSIS (3%).
2. NO EVIDENCE OF INCREASED BLASTS, CLONALITY, OR LYMPHOPROLIFERATIVE DISORDER BY EITHER MORPHOLOGY OR FLOW CYTOMETRY.
3. MINIMAL NORMOCYTIC AND NORMOCHROMIC ANEMIA.
4. 1+ (OF 6) IRON STORES WITH MINIMAL FOCAL INCORPORATION OF IRON INTO SIDEROBLASTS AND NO RING SIDEROBLASTS.
Comment: Kappa and lambda light chain immunoperoxidase stains performed on blocks (A1, B1) show a polyclonal distribution of light chain staining in plasma cells. Deeper sections into block (A1) after decalcification also reveal more intact architecture with no evidence of plasma cell dyscrasia.

TL

What does it mean?

I'm good for now!

I need a nap...

jc

Health update

I have been busy with appointments this week -- three and it is only Wednesday!

First was with Dr. Lee. My white blood count is still low -- OK considering that I don't have fully functioning bone marrow and am taking Thalomid. Still, the new (lower) strength Thalomid should help. We discussed the Aredia infusions, and decided that we should get a bone density scan done. Other than that it was "eat less carbs, more veggies, loose weight, bla bla bla". Yea, I am still quite overweight, but the meds will either make me gain weight or go anorexic. Got the fat side of that coin toss.

The bone density scan was scheduled for later that day at the new facility on La Palma, next to Fry's. Pretty simple procedure. Just that holding still on a slab of ice cold steel threw my back into spazams of muscular revolt. Give me five minutes to settle down, and I can do it, but it takes a lot of effort to relax the back and get "Zen". When he wanted to scan the hips, I had to point my toes inward and hold it for two minutes. That was NOT going to happen, as my toes never have pointed anywhere other that 11 and 2 o'clock. So we scanned one thigh at a time.

When the tech looked at my back, he could only find 4 vertebra. I have had one whole spinal vertebra disappear! Man, that realy messed with his brain. I have 1, 2, mushyblob, 5.

Yea, I can feel it, too.

Today I went up to the City of Hope for my follow up study on chemo brain. Man, that place is humming with construction! After being beat between the ears (yes, it is rough on the grey matter), I went and had a Tommy's Burger (sorry Dr. Lee). I had forgotten how good the chili was, and how meh the hamburger is.

Oh, and I get a bone marrow biopsy next week. Joy.

Well, it is now tomorrow, I better get into bed...

jc

Day Zero + two years

Two years on, I am grateful that I had the bone marrow transplant. I am alive, healthy, and leading an almost productive life.

Would I do it again?

Yes.

Can I do it again?

Probably.

Will I do it again?

The odds are that I will have to do it again at some point. After that, I am out of options.

Health update

Generally, pretty good, but could be better.

On April 30th, I went to the City of Hope BMT reunion. This was my second one (celebrating 1 3/4 years). It is a very upbeat party on the lawn of the hospital grounds. I went by myself this time (girls were in school) and had a very nice time.

I come away with deeply turbulent feelings on these things. First, everyone there is a cancer survivor. That in itself is a reason to be happy. You can also see what damage has been done to the body, scarred faces, missing limbs, unstable gaits. But they survived. When you sit down to eat, you always chat with the people around you. I sat with two ladies that had cancer -- one even had the same doctors as I did! The second lady was your stereotypical older lady with loud clothes and super bright personality that you see at art openings. She survived (her first year), but the toll on her body was enormous. Didn't seem to effect her spirit, though.

Walking around, comparing yourself to other survivors (yes, that is what you do -- and you know it), I seem to have come out pretty good.

That is untill you see the kids with the BMT buttons.

This is what always disturbs me the most. The little kids with a button that says that they had a BMT x number of years ago, but they look only half that age. The toll on their bodies is telling, and obvious, at this early stage of what should be a long life. It can't be easy explaining to everyone that they are not able to (fill in the blank) because their body was attacked by cancer, radiated, chemoed, rebuilt from stem cells harvested from them (or someone else), and somehow they survived -- albet in a much weaker form.

I am blessed that the girls are healthy and strong.

I also like to wander the campus and look at all the plaques placed around their. While interesting, it is also a reminder that these people didn't survive. Hope only goes so far.

The statistics are irrefutable. For me, I have 5 years from initial diagnosis. While I may be cancer free now, there is a 70% chance that it will return. The doctors know the numbers, and while they are quite positive about my long term health, the stats don't change just for me.

That puts a different spin on career track guidelines.

+++++++++++++++++++++++++++++++

As far as how I am doing physically, not bad.

I am fat as a cow, can't feel my toes, can't feel my finger tips, off ballance ( because I can't feel my toes and I am fat), can't remember names worth a crap, get cramps at weird times on weird muscle groups, and can't see well in bright light unless I have my cool new sunglasses.

While I did sign up for the YMCA, I have yet to get into a groove. Excuses, trips, projects, and hey -- is that something shinny? Hopefully, I can get the girls to take me there so they can swim.

My eyes have healed nicely, according to Dr. Rice. I can see 20/20, with some help from reading glasses. While it is nice to "wake up and see the clock", my brain still hasn't been wowed by that. I have to remember to look up to see the clock. It is nice, though.

The thyroid keeps me warm, and I have to keep myself super hydrated or else I start having weird cramps and spasms. I still am learning to listen to my body, something that I really neglected to do in the past.

We will see if I do better over the summer.

I probably should go exercise now (but ice cream sounds soooo tempting).

jc

Cancer update

Last week I had three trips to Kaiser -- one infusion and two doctor appointments.

Infusion went well, as usual. This time, though, the aridia really hit me afterwards. I never experienced the fatigue before, so it was new.

Dr. Sahebi (Kaiser BMT specialist) was pleased with my progress, and took me off another pill. I still have to take the Thalomid, but that's OK. Now it's just vitamins and supplements.

Dr. Lee (Kaiser Oncology) was pleased with my progress too, but was concerned with my white blood count. I get another CBC next week to check on that. He also wants me to take B-12 for my blood. Perhaps I will just eat more steaks.

Toes still tingle, fingers still a bit numb, but that comes with the nerve damage and Thalomid. Balance is a challenge when you can't feel your toes to make the billions of micro corrections you make when balancing.

Cramps are still there, and I can feel it when my feet get cold... it gets painful when you are standing still and your feet cramp up. Looks real bad when one falls over with foot cramps and bad equilibrium.

Well, I need to get dinner started...

jc

Ahhh, now that's better!

Five vials today, and all I had to do was to beg for it.

Does that make me weird or something?

Don't answer that.
++++++++++++++++++++++++++++++++++++++++++++++++++++

With the one drawn yesterday, I assumed that something was amiss, and it almost was.

A few weeks ago I went in for another test (thyroid) and they drew for everything BUT thyroid. E-mailed that doctor, and he said "No problem" and I went on my merry way.

Yesterday comes along, and only one vial is drawn. OK, that is for my infusion that I had today, "No problem".

Yesterday I made an appointment for a follow-up with the BMT folks up at Kaiser Sunset. The old tests are getting a bit stale (Multiple Myloma comes up fast) so I checked with Lisa (the Angel of oncology) today and she said that I have more tests to take.

JOY!

I was at Lakeview anyway for my monthly Aridia infusion, so afterwards, off to the labs for five vials of data.

Now that I am home, three pizza slices and two glasses of 2buck chuck, all is good with the world.

now if only I can wobble to bed.. . .. .

jc

A new blood draw record!

One.

Yes, I was shocked too.

I will probably have more later this week, as it is a busy week. Thursday up to Kaiser Sunset for an appointment with the BMT folks, then Kaiser Lakeview on Friday for my regular oncologist.

Damn, that means I have to loose 10 pounds by Friday.

Well, I better sleep on that one.

jc

Health update for October 6, 2009

Sunday they took 7 vials of blood from me in preperation for...

Yesterday I went to see my Bone Marrow Transplant doctor, Dr. Kogut. While my white blood cell count is low (normal for someone who has had a transplant and taking Thalidomide) , everything else is OK. He doesn't need to see me for another 6 months -- and that's good.

He did mention the need for a bone marrow biopsy. Crap.

And, on Sunday, I twisted my back raking the back yard, and I am now getting those very uncomfortable back twitches that I had before I was diagnosed. Yea, it has me a bit worried.

Other than that, I am feeling quite well. I am continuing my quest to become Jaba the Hut (I am 274 and gaining). Excersise consists of getting up adn getting some frozen M&Ms. Mm Mm Mm!

Gotta go, I think a chocolate chip just escaped from the fridge...

jc