Myeloma Blogs

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Please help by clicking on “Add your myeloma blog” to make sure yours is added.

If you don’t have a blog and you want one, write to me by clicking on the “Contact” link.

By the way, please make it easy for people to comment on your blog by not requiring a login or account creation.  You may end up with some comment spam, but the rewards in real comments will offset the inconvenience of dealing with the spam.

There is a new plugin pulling in the blog feeds. We no longer have post content being displayed. You’ll just see links for the most recent posts. The older posts will still be kept, since some blogs no longer exist.

Thanks,
Beth

Latest Posts

Cycle 2 Week 9: Cancer is doing weird things to my body

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In mid-Dec I was having headaches that wouldn’t go away so I went to my hospital’s Urgent Care for an assessment. A CT Scan didn’t reveal lesions or tumours. While waiting to see an ENT (Ear Nose Throat) Resident, I had a period of uncontrollable chills and shaking, that I attributed to my body being cold. The ENT Resident examined my nasal passage and found I have chronic sinusitis due to my cancer, so he prescribed a nasal spray to repair it. He also said that the random lumps in my mouth were benign.

Later that week when I arrived for chemo treatment I was coughing and had a fever of 39.1C, so I was isolated and various tests were taken. Chemo treatment was stopped for two weeks and I was placed on antibiotics. Results from the CDC revealed that the uncontrollable chills, headaches, and fever were a precursor for the Adenovirus, a virus that attacks people with immune suppressed systems. One of my pre-chemo drugs is actually an immune suppressor. Thankfully after a couple of weeks I had fully recovered from the Adenovirus and my chemo treatment continued.

My Dec blood test results were pretty meaningless (jumped to between 47 and 48 from between 40 and 42 in Nov) as it was based only on my first chemo treatment which was Cycle 1 Week 1. Cycle 1 Week 2 and Cycle 1 Week 3 were cancelled due to the Adenovirus. I remain confident that January’s blood test results (based on usual 4) will show a drop in my cancer levels.

Overall, I’m really focused on listening to my body, eating healthy, and relaxing as much as possible to help my chemo be as effective as possible. Bed has been my friend recently.

My mobility is compromised due to the lesions in my pelvis, so walking up stairs is no longer possible, without significant difficulty.

I really don’t stress about the various things going on with my body. I have an incurable cancer and I’m alive, so I’m thankful for that.

I take each day as it comes and focus on being calm and happy.

Cycle 2 Week 9: Cancer is doing weird things to my bodySelf-portrait: Rest is key for my health
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I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable.

From December 2019 I’ve been on Darzalex (Dartumumab), an IV chemo with Velcade (Bortezomib), a chemo injection + dexamethasone.

Steveston - Canada GeeseMay 2014: Steveston – Canada Geese

The post Cycle 2 Week 9: Cancer is doing weird things to my body appeared first on Fade to Play.

Simple Sunday

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Whew, jury duty was brutal. We ended up a hung jury as one juror was deadlocked. I at first was on the not guilty side and then after reviewing all the evidence went with a guilty verdict. But it didn’t change the outcome as a mistrial was declared. Not sure how the lawyers proceed but that’s not my worry. I was completely wiped out by the end.

It’s raining here quite hard so no walk today. The Frogg Toggs I got for Christmas needs to be returned as they don’t fit quite right. So no walking today unless it lets up( just checked weather and no letting up).

I’m planning on going to the gym today as tomorrow is my prep day for the dreaded colonoscopy.  I’m sure I’ll get thru as I’ve clearly been thru worst.

I need to get my labs done this week too and think I’ll plan on Thursday.  I see my doctor in February(middle) so there’s time but I like to know my results before. If it continues as it has been my rise should be around 11 points taking me to @ 65mg/L Kappa light chains. The ratio will probably go up to. I actually feel ok but Myeloma is tricky that way and that’s why some people don’t get diagnosed till a fracture like I did. Well, no sense worrying about that now.

Yesterday I made lovely baked potato soup. It came out great. I used the Vitamix to blend and it came out very smooth. Tonight I’m making breakfast for dinner to keep it light. Just scrambled eggs, maybe pancakes and/ or toast. I might do some of Adelle’s chicken sausage as I need to use that up.

 

Random thoughts and other things…

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I wonder why some people stop blogging. I follow some great bloggers in the UK and in Wales. When I clicked on the blogs they follow most of them no longer blog. They seemed quite successful and nicely laid out so one wonders did a life event or spam stop them cold in their tracks.  I think blogs evolve because you change and so does your world. Children grow up, some people have illnesses, etc. Anyway, just some random thinking.

Yesterday, I made it to the gym and it was not crazy busy but still somewhat busy. The 10am slot must be the busiest since most people are out and about plus there are 2 classes still going on at that time. I like to go around 10:15 am but I may bump it out to 11 am as most people are leaving then. ( another random thought)

Today I’m home doing some house things and cooking. I have 12 large potatoes in the oven to make double stuffed potatoes. This will make about 9 halves that I can freeze for easy dinners. Then later I plan on making a turkey roast and will have one or two of the baked potatoes with that. Earlier this week I made Maine Baked beans from Mavis over at 100 dollars a month

Unfortunately, I couldn’t find the recipe again so maybe it’s in an old post.

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Basically, you have to soak the navy beans overnight and then cook for an hour or two before putting in the oven. I only did an hour and it really did need another one. But then you bake in a dutch oven for @ 6 hours. It really was delicious. It’s not an easy on the table meal but great for a rainy weekend. I like her recipe since it didn’t add bacon which the veggie can’t have. But I added Adelle’s chicken sausage on the side.

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Tomorrow I have the jury deliberations. I’m on the fence with it so I guess I’ll hear what other people say. I hope we’re out by noon.

other random things…

I checked the Cobra and the medical was canceled so that’s good. I still need to call and find out how we get a card so we can use the Vision and Dental?? Always something to call and check on.

We also made the decision to postpone Yosemite with the Norovirus so maybe we’ll try again in March.

If We Take Away The Drug Companies’ Government FREE LUNCH, THE SKY WILL BE FALLING! Part 3 Of 4

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 Let’s set the stage by first establishing the logic behind not negotiating Medicare Drug prices.  The first is this will limit the development of fewer drugs because the drug companies will develop fewer drugs.  The other is that we will not have access to many of the current drugs for cancer which are currently available in the US but not in Europe or other countries.  Some very good arguments if they were at all credible.  But I would argue it is nothing more than Bogus Spin by Drug Companies and their lobbyists. The Drug Industries’ efforts to  Pettifog the Public!  I will talk about each of these points in detail. 

Before I begin the analysis of these arguments, I  believe they all are in fact mute.  If our government was a government which represented the people, one would think that if 9 out of 10 members of the public believe we should negotiate Medicare D prices, how on earth could  it not be law NOW? Something is very wrong with our democracy, when just 10% of the people can DICTATE policy! 

With all of this doom and gloom you would think the Medicare Part D was the vast amount of the global drug spending.  However, in 2017 Medicare Part D spending was just $154.9 Billion of the total worldwide spending of $1135.0 Billion.  This is 13.6% of the world spending.  The Congressional  Budget Office(CBO)  projects a savings of $49 billion per year and at the average after tax profits of Pharma at 14%,  the impact on the bottom line of the international drug industry would be $6.9 Billion or just 6/10 or 1% if I were to provide a liberal estimate of the impact to pharma.  Let’s just say, because we do not negotiate price the profit on Medicare is 3 times greater than the industry average or at 42%,  then the impact would be just 1.8%.  Someone seems to be trying to make a MOUNTAIN out of a molehill.  The source of much of this information can be seen if you CLICK HERE!  The CBO also estimates that the loss in revenue for drug manufacturers would lead to 8 to 15 fewer drugs coming to market over the next 10 years of the approximately 300 drugs expected to be approved during this period.  To me drug companies will continue to do what they have always done to improve profits and that is to JUST RAISE PRICE. With drug increases of over 10% each year for 5 years and 2017 at 8.4%, any impact of lost profits would be offset by just one year of price increases.

The final point on the suggestion negotiating price will limit the development of new drugs.   If you can make profits and your bonus by just raising the price of your existing drugs, why go though the heavy lifting to develop new drugs.  If we take away this FREE LUNCH, major drug companies will have a greater incentive to develop new drugs to achieve improved profits.  In addition, big pharma will more likely look to the small biotech companies who are a major incubator of drug development and help them to bring great ideas to the clinic.   The process used to be these small inventive companies would develop ideas conceived at Universities, the NCI,, Teaching Hospitals and Labs, bring them to a level of development and then be taken over or funded by large pharma which had the financial might to spend the $2.5 Billion to get these drugs to market.  This process has been disrupted when all you have to do is raise price to make bonus.  The inventive, small biotech companies now are starved for funding, and are seen as easy targets for destructive stock manipulation, which can and does bankrupt these small vulnerable agents of invention.

The last argument is just preposterous!  New drugs are patented so drug companies can sell them as a monopoly for several years.  For the European’s they set the price based on a value of $50,000 per year of life saved by a drug, and the US has a number from ICER which is a benchmark at $150,000 per year of life saved.  So the USA will always be the first country to get drugs approved based on having a much higher threshold for drug denial at 3  times that used  in Europe.  

Just as an aside, I recently attended the ASH(American Society of Hematology Meeting) in Orlando and was amazed at the explosion in new treatment developments.
With this new backlog of drugs in later stage development, the future of FDA new drug approvals looks outstanding. 

The last important part is the graying of America and the world, which provides a HUGE tail wind to the growth in Pharma sales and profits.  This has been reflected in the  tremendous growth which we have seen in Medicare Part B and Part D spending..  In 2017 spending was $185.3 Billion of the total USA spending of $333 Billion.  This was 56% of the total by just 15% of the US population over 65.  The US population over 65 will increase to 21%  of the US population in 10 years, 40% greater than today.  Logic would therefore assume Medicare spending would increase by 40% or $74 Billion without a price increase by Pharma due to just the aging population.  A way to reduce Medicare costs are right here, without cutting Medicare funding at all.  NEGOTIATE PRICE!

Good luck and God Bless your Cancer Journey/ editor@myelomasurvival.com
For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

First Myeloma Status Labs of 2020

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Hello 1.20.20

Hi Everyone,

Today was the usual Monday Medication Madness of 40mg Dex Steroids first thing in the morning.
Then one Velcade shot in the belly jelly in the aftternoon.
Then 400mg of Cyclophosphamide chemo pills with dinner.
How’s that for a Myeloma pummeling triplet cocktail, that so far has done the trick since about September 2018!! Hoping to stay on this madness for a long time, as I’ve got the routine down, and I can somewhat predict the weekly crash and side effects.

Yumm Yumm!
Get in there Velcade and do your thing!

I have a Dr consult in person this coming Thursday, and should have all my Myeloma status labs by then. I always silently “bet” with myself if my numbers will be around the same, or down, or up…
Not sure what I’m feeling, guessing from yesterday’s labs… hmmm…. what’s your guess?
I only cheated with doing half the Dex steroids back in Dec, but have been a good patient ever since. Back to “high dose” 40mg Dex weekly, so maybe my myeloma numbers are status quo, or down? I have figured out that when my WBCs are low, I get a bigger reaction from Dex, then when my WBC is higher. And I was shocked at my CBC results from yesterday!

My WBC is a shocking “high” of 3.7 (which often means I am sick, or getting sick), RBC low tho, but all my organ status labs, creatinine, calcium, etc, are in the low to normal range. How can that be?? How can this ol bod tolerate 10 years worth of continual chemo, meds, immunotherapy, etc. How long have you been in treatment, and continually on treatment?

You know those cancer articles, TV pharma commercials, poignant news features of one’s loved ones being on chemo for 6, 9, etc weeks, or months, and the families are devastated with what happened, then fortunately able to celebrate treatment success… Well I do a mental gulp (sometimes a pissed snicker if I’m on my steroid crash), at the “short” treatment time mentioned,… as what I and my Myeloma buddies would do for a short treatment outcome, not to mention, being “done” with chemo!… My heart truly hurts for anyone’s diagnosis, but TRY DOING 10 YEARS WORTH OF TREATMENT, not 10 months!! Try knowing your treatment is forever and endless, to “the end”… Honestly, lucky them for being able to “ring the bell” of being DONE with chemo treatment in a “short” amount of time. Ring the bell, ha, not this gal, thanks to Myeloma’s incurable status. Not bitter, just facts, just reality. Sorry I keep perseverating on this, but I’m just still so surprised and shocked with my situation. This just can’t be! How can I have cancer? How can I have incurable Myeloma? How can have been on weekly chemo treatments SINCE 2010!!??

Some of my Myeloma status labs will trickle in before my Thursday appointment, but some are not released until I see my Dr. But I will update this post as the lab results come in, so check back if you’re curious my MM status.

All else is continued loony bin ridiculousness here… again, just can’t wrap my head around how our lives became all about sickness, illness, side effects and dysfunction. Just mind bending. If you know us personally, you get this shock. But as I always say, I have so much to be grateful for, especially considering the BIG PICTURE out there, and what I read on all the myeloma social media posts. Wow, the suffering and challenges are just unreal :((

Here’s to hoping your’re able to work on your 2020 dreams and goals.
My top goal for 2020 is “Less is More” regarding slowly sorting thru all our 38 years of stuff… I have so few “good days” where I have the helium to do this, but thinning things out, and storing away the sentimental mementos is my top priority. It used to be that if my inner self was at peace, calm, organized and joyful, all was ok. Now, forget that LOL, it’s all about the external visual. Lessening perceived visual chaos, which in turn lessens my inner chaos, and brings a sense of calm and peace to my life. Our awesome caregiver Chris moved my (finally packed up!) bins and bins and bins of Halloween and Christmas decorations out to our “storage trailer” in the back. Sadly this now “storage trailer” used to be Jim’s off road toy trailer. Shows how much our life has changed, and the sad symbolism of a fun vacation trailer, becoming a storage shed :((((  Jim would be so sad if he could comprehend all this, but sadly, his Alz self just can’t process our reality. He does know when I’m gone to chemo, and wanders around the house and property (with his caregiver) looking for me :(( He still tries to do horse chores, as that’s the old routine embedded in his psyche. Just such a tragedy on every level for him, as he was so healthy, and so active, and should have had old age fun as an old ranch guy, just moving around slowly, but functional, picking up the horse poop, planting roses, raking the dirt, cleaning the barn, shopping for us, etc,… He loved nothing more than “doing”, being busy, doing. He’s just “existing” now…

We never know what’s coming down the line for us. And I certainly did not anticipate the big ol train wreck we are…

This is what I had hoped for…

May your dreams continue to come true, and your life goals always be in process…

Priscilla

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Well, it’s been a really rough three weeks. The first thing that happened was on January 1, no kidding, when I came down with a case of the flu (much worse than the before-Xmas flu). It’s going around. A lot of people are sick with this thing. Anyway, it hit me with a very high fever and huge gastrointestinal issues. Terrible. Plus, one night, delirious with fever, I fell against the bathroom wall and injured my wrist. Ouch.

Because my wrist was all swollen and hurt like the dickens, and I feared it might be fractured, Stefano took me to the emergency room at Florence’s university hospital, Careggi. We spent 13 hours there. They checked me out thoroughly, not just my wrist, but everything, from head to toe.

Result: I had pneumonia, but luckily my wrist wasn’t broken. No fractures, nothing. Just a bad trauma. So they put a sort of splint (which was partly a cast, too) on my arm for a week, and now that the cast is off, I have to wear a brace for another 10 days or so. My wrist will be fine. Oh, and my pneumonia is gone, but I still have to be careful…so I’m convalescent, well, I’ve actually been convalescent for more than a week now.

So things are getting better for me, physically, I mean, and in fact I can finally use my left hand to type a little bit.

But something simply awful happened on Friday morning. I found Priscilla, our 14.5 year old cat, lying on the bathroom floor, panting, not moving at all. She didn’t respond to my voice, as she usually does. Scared the heck out of me. Here I was, with a brace on my arm, unable to do anything for her…pick her up, etc.

I called my cat sitter who came over and drove us to the vet clinic.

In a nutshell, after a whole bunch of tests were done on Priscilla, we found out that she had advanced heart failure and that her chest was full of pleural fluid, which the vets aspirated, well, most of it. The prognosis wasn’t good, of course. But the vets said that if she responded to treatment, she could come home with us…as early as today, Monday, yes. So we left her at the clinic. We really didn’t have a choice, since we believed that she would get strong enough to come home…

Knowing what I know now, I wish now that we’d just brought her home on Saturday.

Yesterday, early Sunday evening, that is, Stefano and I were preparing to go see her at the clinic, at the regular visiting times, when we got an urgent call from the clinic. Priscilla had gotten much worse, and we were told that she was on her way out.

We rushed over to the clinic, but we arrived too late. She had passed away just a few minutes before we got there.

We didn’t have a chance to hold our sweet kitty and say goodbye, and let her know that we were there and loved her. And that’s what’s killing me right now…and Stefano, too, of course.

It just went so fast. Too fast. We weren’t prepared at all for this. She was here with us on Friday…and gone yesterday.

We’re devastated. Absolutely shattered. We now need time to mourn…we need time…Oh, this is so hard. I just wanted to let you know that I probably won’t be here on the blog or FB anytime soon. Sorry about that. I’ll be okay, but, as I said, I need some time…

Now I need to stop typing because my wrist is bugging me.

Take care, everyone. I’ll be back as soon as I feel better. Ciao!!!

Simple Sunday

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It’s still cloudy and chilly here in Northern California. There was a big storm that came thru Wednesday and Thursday with I 80 getting closed due to spin-outs. The temperatures are supposed to go into the mid50’s and low 60’s next week so that’s better.

When it’s this chilly which is all relative, I don’t wander around outside much but I’ve decided to start doing at least 15 min outside even if it’s just raking.

Of course, I walk most mornings very early and it’s quite freezing. Literally 32 degrees, but somehow that’s just my MO.

I’ve had jury duty this week and I go one day next week. It’s all quite interesting but for me, with my IBS, I get quite nervous about bathroom access. I did fine because I didn’t eat in the morning.  I’m keeping track of what I’m eating to see what, if any, pattern there is. Plus I am somewhat claustrophobic so being confined to the jury room is a little stressful.  But I made it along with 12 others.

I’m definitely not used to being out all day and that was very stressful. My daughter made dinner both nights so that was nice.

I canceled the medical part of the Cobra so hopefully, that went thru as you do it by email. It takes up to 7 business days to reflect so I’ll be checking the online site. We did request to keep the dental and vision at least until I get that covered by something else. What do other people do? Is it AARP that has a separate dental plan and what about vision?

B was also able to get the very last of his 2019 SDI because we had the doctor say he was still disabled. It wasn’t a lot but it will certainly help.

We went to Costco and did some grocery shopping and filled the car up with Costco gas.

I read that there has been a norovirus at Yosemite from mainly people eating at the Ahwahnee so now we are decided to probably not go since we cannot even risk B getting something like that as it could activater his GvsH.  we have some time to think about it but there are other places we can go. We’ll see…..

I didn’t get to the gym today so I will go tomorrow.

 

Midweek musings

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We lost another chicken yesterday. It was one of our black and white ones. I looked all over for feathers but nada. I’m guessing it was the fox since he’s coming nightly to try and get compost( it’s closed). But foxes do hunt in the day. It always makes me sad to lose one. Now there are only 4. We aren’t planning on getting chickens this year but maybe next. I think we all need a break from the daily chicken routine. But I do love having chickens though and they eat bugs and keep snakes away. Still, the morning and night routines do get old and we have to lock them up as the raccoons would get in their pen.

I’m still checking daily on jury duty but there are 2 more days and last time I did get called on Friday which was weird.

There’s still a lot of uncertainty with things financially and with B finally giving his resignation. We think now that the long term disability we were counting on for the next 5 months won’t happen since he will be retired from UNFI. He’s still medically unable to work but because he will have left UNFI by Feb 1st we think they will say that’s that then.  Has anyone had this happen or been in a similar situation and still was able to get the long term disability? Hartford has tried everything not to pay and succeeded so I’m guessing they will win on this one too.

Some good news is though Merck, the drug company, approved B getting the Tier 5 drug Noxafil for free. That would have been an initial $2000 approx for the first month. I think it was @ 1750 or around that. So that is great news.

With that being resolved we can now drop the Cobra and just do Medicare and supplementals. It’s kinda scary giving up the Cobra but really it’s been a royal PITA. Especially the prescription part.  The one thing I need to check is if we can keep the Cobra for just the dental and vision. Before with the other provider, we could but as of January 1st, the provider changed. Actually, that’s when the issues with the prescription part started happening.

So still lots of things up in the air.

Mayo’s Myeloma And You: A Day For Patients And Caregivers

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When Pat Killingsworth started Pat’s Myeloma Survival School he wanted to develop something which focused on the Patient and Caregiver.  He had attended many of the meetings like ASH and ASCO and found they were designed with a focus on the medical community, and lacked a patient focus.   At the time these sessions were held in the Jacksonville area so Mayo had a big part to play in them.  I got the same feeling at Mayo’s Myeloma And You Program as I had at Pat’s Survival School. This is why!  

–  The first 3 speakers were either patients of caregivers with lots of time for questions
–  Doctor Asher Canaan Khan and Dr. Sikander Ailwadhi have an uncanny way of providing a patient friendly presentation with humor
–   The second half of the program was all about supportive care
–  Dr. Mohamed Kharfan-Dabaja and Dr. Sikander Ailwadhi discussed the new CAR T program at Jacksonville, and the work they are doing with several malignancies including myeloma.
–  Dr. Ailwadhi discussed the many clinical trials which are currently available including AMG 701, BiTES, CAR T, ADC, Selinexor, and CLR 131.
–  Dr. Asher Chanan Khan discussed breakthroughs and Immunotherapy. He highlighted a new vaccine therapy which he feels just may be the BREAKTHROUGH for cure we have been hoping for.  Many vaccines have been tried and failed in the past but he feels he has finally found the key!  I hope he has, he is usually right!
​-  This Mayo Myeloma And You Program is just 2 years old and the growth has been exponential and the cost at $20 per person is a deal. Over 200 participants this year.  The drug companies like Takeda, Celgene, Sanofi, & Karyopharm helped to fund this program.  

Knowledge is power and for myeloma it is LIFE!  Thanks to all who helped to bring this patient and caregiver focused program to the myeloma patient population.  To me more should be presented using the Pat Killingsworth Survival School Template.

Good luck and may God Bless your families cancer journey. For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

A few pictures from the meeting.