Myeloma Beatdown

Blogging again.

June 26, 2019.

After a lovely, easy, three-year ride on a two-drug myeloma
regimen, my right shoulder was hurting and a PET scan showed a lesion (a
collection of myeloma cells showing bright red) in my right scapula.
M-spike and IgG hadn’t changed, but Lambda Light Chains had more than doubled.
The myeloma was back. It never gives up.

My Mayo doctor ordered radiation treatment of that lesion, and added
dexamethasone to the two-drug therapy. Now, a month later, the ten
radiation treatments are complete and I’m taking the dex. Last week’s
blood test showed Lambda light chains back down to normal again, a very
good sign.

Another PET scan and doctor’s appointment in a couple of months will tell us whether that scapula
really is better. I think it is, because my shoulder doesn’t hurt any more. It itches a little, because the radiation lightly toasted the skin over the scapula, but I don’t mind and it will heal.

A lesson learned:  A lesion formed but neither M-Spike nor IgG went up, which means that at least some of my myeloma is “nonsecretory” (doesn’t secrete monoclonal proteins).  Therefore we’ll have to pay more attention to Lambda Light Chains. Maybe I’ll need more PET scans too?  I wonder if there’s a limit on those these days. Checking Lambda Light Chains is just a simple blood draw for a lab test, though it’s nowhere near as comprehensive as a PET.

We Had Quite the Morning

Hi there, gang.

We had quite the morning.  We saw Dr. Mannina the Radiology Oncologist at 8:30.

He informed us that Dom had broken ribs on the right, new lesions on the left, and a large lesion on his right hip.

A year or so ago was when Dom had a Plasmacytoma on his right hip.  That’s when he fell out of an 8-year complete remission.

So, here’s the plan:

We go in Tuesday afternoon to get measured for a contraption that will hold Dom’s arms over his head.

He’ll get about 30-minute sessions when they’re ready to get started.  Dr. Mannina is going to blast the hip, and “graze” both sides of his ribcage so as not to affect any internal organs.

He sent us downstairs for Dom’s 8th Darzalex infusion.

When we arrived at the infusion center, the gang had Dom all set up in his favorite “corner office”.  A lot of room and not sitting on top of anybody.

The volunteer already had our Diet Cokes, candy bar, pillow and blanket waiting for him.  This guy, Richard is a DOLL.  His wife is currently getting treatment for Breast Cancer, so he knows all too much about the ups and downs of treatment.

Our nurse cleaned his port and started the steroid infusion.

Brian, our favorite nurse from Dr. Calabresi office next door came running in…  “STOP  STOP!”.

After consulting each other, the 2 doctors didn’t want any Darzalex in his system for next week.

Sooooo…  Fitting on Tuesday, then 10 Radiation Treatments, THEN back on the Darzalex.

As you guys all know, the Radiation works wonders for pain, so we’re happy to get started.

ONE THING AFTER ANOTHER.  *groaning*

An Update on Our Patient

Hey, gang.  It’s been rough, but we’re finally seeing light at the end of the tunnel.

He went through 10 radiation treatments on his C-3 Vertebrae. As warned, his throat closed up.  He couldn’t eat for a couple of days.  Meanwhile, he was coughing and cracked or broke a couple of ribs.

Poor Dom stayed in bed for 2 days.

He’s feeling MUCH better, thank God!

Yesterday was his first Darzalex infusion.  Talk about a LONG DAY.  We were at the Cancer Center for over 10 hours.  Plus a couple of hours driving.  *whew!* 

I’m happy to say that his care team was delighted.  He had NO SIDE EFFECTS.   The next infusions will be quicker starting next Thursday.  

He’s up and about today and feeling GREAT!

Thank you for your continued prayers and good wishes.

It’s Worse Than we Thought.

Went to see the Radiologist today.  He’s not concerned with the lesion on Dom’s shoulder blade.  He showed us how the Myeloma is eating away at his vertebrae.

This is basically going on at the base of his neck:

Notice the bones missing on the right side (it should look like the other side)

So, they did another c/t scan and fit him for a mask in Radiation.

Doc is going to blast him 10 times in a row.

And THEN start Darzalex.

He said that after this treatment, we might consider going to a Neurosurgeon to have him put a plate in his neck.  But not now, as he’ll be bedridden for a while and the MM will run rampant.

Radiation starts tomorrow.

And So it Continues. Dom Can’t Catch a Break.

A few weeks ago, Dom had a full body CT Scan.  His shoulder has been KILLING him.

Multiple Myeloma can cause soft spots in the bone called osteolytic lesions, which appear as holes on an X-ray. These osteolytic lesions are painful and can increase the risk of painful breaks or fractures. Myeloma can also cause nerve damage or pain when a tumor presses up against a nerve.

Sure enough, they found a lesion on his left shoulder blade. 

Our team at the Slidell Cancer Center got the ball rolling quickly.  It all starts tomorrow with an appointment with Handsome Dr. M. who is our Oncologist Radiologist. 

He’ll probably make a mold of Dom’s shoulder blade and get started quickly.

Then Thursday, starting DARZALEX which isn’t Chemotherapy, but rather a TARGETED Therapy that seeks out and destroys Myeloma cells.  We have to be at the Cancer Center for 7am *groaning*, and they expect it will be an 8-hour infusion.

INFO ON DARZALEX HERE

So, rolling right along, gang.  We’re happy to get this crap started!

And, So it Continues……New Lesions But with Zero M-Spike!

We went to Tulane yesterday.  It was one of those “good news – bad news” things.

Dr. Safah said that he had ZERO M-SPIKE.  That he was in remission after just a couple of rounds of chemo months ago.

BUT-

He’s got a new lesion on his “good” hip.

She wants us to get radiation in Slidell, continue Physical Therapy, and then return to her in a few weeks.

She wants to start him on KYPROLIS® (carfilzomib) as soon as he’s done with radiation for pain. Doesn’t think that it will cripple him like Velcade/Revlimid did.

This makes absolutely NO SENSE to us.  His blood is clean, but these Plasmacytomas keep popping up?????

So, we met with our Slidell Cancer Center Radiologist, Dr. Mannina today.  We LOVE the guy.  He was zapping Dom’s other hip last Spring/Summer.

We’re headed back on Monday morning for measurements, etc. and will begin 10 radiation treatments over 2 weeks on BOTH hips.

Anyway, gang…. our heads are spinning.  We’re on a new journey.  Please say a prayer.

Our Progress Report- So Far So Good

We’ve had a busy couple of weeks.  Today Dom completed his 5th radiation treatment on his left hip.  Only 5 more to go.

We’re meeting with a gal at the Slidell Cancer Center on Monday to discuss medications and insurance.

His last radiation treatment will be next Tuesday, then we have an entire, much needed, week off.

Meeting with his Slidell Oncologist on June 1st, where we’ll learn about his Chemotherapy schedule.

After radiation this morning, we dropped off the oncologist’s letter stating that his cancer had returned to our local Veterans Services Officer.  She’s a doll…the same gal that took care of us in ’08.  She felt confident that he’ll receive 100% disability from the VA.  They’ll be in touch to set up an appointment with one of their doctors.  I just hope that it happens AFTER we get more information on June 1st.

So-  Things are happening very quickly.  Our patient looks and feels great, although the radiation is starting to bother his hip.  (nerves have become effected from the radiation)

Thank you for your continued prayers!

Solitary Plasmacytoma…. A CT Scan of Dom’s LEFT hip

This was taken on Wednesday.  The image is flipped.  The area circled on the right is actually his LEFT hip.  This is where they suspect a Plasmacytoma….and where he is getting radiation.  Notice the difference between his “good” hip and the affected hip.

We finished up “day 2 of radiation” yesterday.  8 more to go. The radiologist warned him that although he feels nothing now, the pain will be coming from surrounding nerves around the hip that will be affected by this radiation.

We have the weekend off, and then back at it Monday morning.

Solitary Plasmacytoma

Solitary plasmacytoma is a rare disorder that is similar to multiple myeloma, although patients do not have myeloma cells in the bone marrow or throughout the body. Instead, patients have a tumor composed of plasma cells that are restricted to a single area of the body — usually the bone, but sometimes an organ.

At Memorial Sloan Kettering, our experts diagnose solitary plasmacytoma when a biopsy of the tumor detects the presence of plasma cells, but additional tests do not reveal signs of multiple myeloma — such as amyloid protein in the blood and urine, or the presence of myeloma cells in the bone marrow.
*THIS IS DOM….  bone marrow and blood work have been fine*
Our doctors can sometimes cure solitary plasmacytoma of the bone with radiation therapy or surgery to destroy or remove the tumor. However, 70 percent of patients with solitary plasmacytoma eventually develop multiple myeloma and need additional treatment such as chemotherapy, possibly combined with stem cell transplantation.
*This is DOM also*

When this type of tumor develops outside the bone — in the lungs, throat, or other organs — it is called an extramedullary plasmacytoma. For more than half of patients with extramedullary plasmacytoma, the condition is cured with radiation therapy. Less frequently, patients with extramedullary plasmacytoma develop multiple myeloma. Our doctors also can treat this progression of the disease with chemotherapy and, for some patients, stem cell transplantation.

Dom’s Cancer is Back

Well, gang-  after complete remission for over 7 years, his MM has returned.

His blood work and bone marrow biopsy showed absolutely nothing alarming.  His hip had really been bothering him, so Dr. Safah ordered an MRI.

We went to see her on Thursday, fully expecting yet another clean bill of health.

NOPE.

The MRI showed a 9.3-centimeter lesion on his left hip.  (Measures 3.66 inches in diameter).

So, she calmly announced that he was to stay off of his tractor, watch how he sits down, etc.  She’s afraid that he would suffer a broken hip.

Then went on to say that she was ordering 10 radiation treatments, 2 months of Chemo and ANOTHER Stem Cell Transplant.

Needless to say, my eyes filled with tears.  She smiled and sweetly said that she wasn’t the least bit concerned.  He did so well last time and remained clean for so many years….. that he would breeze right through this.  She said that this time it would be much easier on his body.

We met with a Slidell Radiologist doctor and our Slidell Oncologist on Monday and Tuesday.  The Radiology department did a CT Scan and tattooed his hip.

Our Slidell Oncologist said that he suspects that this is a Plasmacytoma, as his bone marrow and blood wasn’t the least bit alarming to them.

Radiation begins tomorrow.

This time around his Chemo will consist of Revlimid, Velcade, and Dexamethasone.

My tears have ceased and we’re both very confident with our new team.  Dr. S. from Tulane told both of these Slidell doctors that he would zip right through this process.

After Radiation and Chemo, they’ll gather his Stem Cells and the transplant will be done in New Orleans at Tulane.

This is all happening very quickly.  We walked around in a daze all weekend but hit the ground running on Monday.

Radiation for Lesions

In discussions with my physician regarding the lesions in my bones (in one case leading to rib fracture) we surveyed treatment possibilities. I was expecting to be referred for beam radiation since that was the treatment of choice for me on three prior occasions. Radiation is primarily for pain control rather than combating the cancer. I’ve had three instances of 14 day treatment plans in order to gain relief from pain at the top and bottom of my spine and in my pelvic region.

However, this time my physician suggested looking into an IV radiation method using either Samarium or Strontium. He favored Samarium and so the majority of this post concerns therapy with Quadramet, the brand name for Samarium.  Both are treated by the body similarly to calcium and are attracted to areas of enhanced cellular activity. In other words, there is a natural tendency for the body to direct the radioactive particles to damaged areas. The compound emits both medium energy beta particles and gamma photons which kill adjacent cells in much the same fashion as external beam radiation methodologies. The half life of the radioactive component is measured in hours and unabsorbed materials are excreted through urinary function. The treatment is suggested in cases where external beam activity stands a strong chance of affecting nearby tissue or material. Again, in my case, the lesion is so close to the lung that external beam technologies would likely burn portions of the lung. While this is not a great issue for those with healthy lungs, it is for people like me who have suffered significant loss of lung function (asthma, COPD, etc).

The treatment can have strong collateral effect on bone marrow which in turn reduces white cell production, in turn reducing immune system effectiveness. As with chemotherapies, patients are vulnerable to collateral infection and so blood testing of the patient in treatment is suggested on a daily basis. Unlike external beam radiation, Samarium treatment has shown no propensity to spawn new cancers, however it does produce certain side effects which, in varying percentages, can produce adverse events. These are reported by the FDA as:

Adverse events were evaluated in a total of 580 patients who received Quadramet® in clinical trials. Of the 580 patients, there were 472 men and 108 women with a mean age of 66 (range 20 to 87).

Of these patients, 472 (81%) had at least one adverse event. In a subgroup of 399 patients who received Quadramet® 1.0 mCi/kg, there were 23 deaths and 46 serious adverse events. The deaths occurred an average of 67 days (9 to 130) after Quadramet®. Serious events occurred an average of 46 days (1 – 118) after Quadramet®. Although most of the patient deaths and serious adverse events appear to be related to the underlying disease, the relationship of end stage disease, marrow invasion by cancer cells, previous myelotoxic treatment and Quadramet® toxicity can not be easily distinguished. In clinical studies, two patients with rapidly progressive prostate cancer developed thrombocytopenia and died 4 weeks after receiving Quadramet®. One of the patients showed evidence of disseminated intravascular coagulation (DIC); the other patient experienced a fatal cerebrovascular accident, with a suspicion of DIC. The relationship of the DIC to the bone marrow suppressive effect of Samarium is not known. Marrow toxicity occurred in 277 (48%) patients

Treatment is intravenous and is administered over a period of 60 seconds and is followed by a saline flush. Patients are encouraged to drink two cups of water at the time of injection and encouraged to push fluids and urinate as often as reasonable following treatment to reduce radiation exposure to the bladder. Treatment with Samarium and Strontium are very similar in their natures.

The treatment is interesting and frankly, I hadn’t heard of it before my hematologist suggested it. I thought I’d pass along what I’d learned about it since bone damage is so common to those of us who suffer from Multiple Myeloma.