Dom's in a LOT of Pain

He had a full body bone-scan done a couple of weeks ago.  Images below are showing his "hot-spots".  Breaks, cracks or lesions.  It's showing the bones attempting to regenerate.

The first image below is untouched:

On this image I circled his "hot-spots":

We think that all of these broken ribs are a result of the 10 radiation blasts on his C-3 Disc.  They caused his throat to close up.  THEN the coughing began.

His ribs were already weak from lesions, and the coughing snapped them.

They did an MRI on his right hip after consulting an Orthopedic Surgeon.  The guy wasn't concerned that this would cause Dom to fall, as the hot-spot isn't in the socket of his hip.

We're guessing that it's a new lesion.

This goes on and on and on!  My guy is a "Hurtin' Little Cowboy", I'm afraid!

We're Rolling Right Along

Dom is getting stronger day by day.  His physical therapist has basically made Dom his "project".  Dom almost feels guilty, as the guy pretty much ignores everybody else when we're there 3 days a week.

He loves his rollator and doesn't use a wheelchair any longer.

Things are finally returning to normal for us.

We attended Mass for the first time in months last week.  It felt SO GOOD to be back!

We spent much of today at the Tulane Cancer Center.  Dr. Safah grabbed some blood work for his M-Spike and Light Chains.

She also gave us orders for a couple of MRIs on Friday.  We can do that locally.

He's getting his monthly Zometa infusion tomorrow.

Then back to Tulane in a couple of weeks.

She mentioned a drug that kills Myeloma, but isn't CHEMO.  Sounds good to us.  We'll learn a lot more in a couple of weeks.

Thanks for continued prayers and good vibes!

MRI.....AB FAB News!

I just got a call from the Slidell Cancer Center....

NO NEW LESION!

The pain in his right hip is probably a pinched nerve.

The LEFT hip has improved!  (Maybe the Zometa is working already)

Music to our ears!

(Our patient has been in bed all day, but hoping he'll perk up in the morning.)

Thanks for the continued prayers, gang!

A Dom Update - Bed during the weekend, then back at it.

He had been feeling very weak and woozy since last week.  He basically spent the weekend in bed.

On Monday, we headed into Bogalusa to have his weekly blood work done.  I dropped him off at the door to shop and returned to find out that he couldn’t make the walk to the lab.  They kindly gave him a wheelchair.

Yesterday was a FULL day.  He had an MRI appointment at 11:30 at the hospital.  Then, the Cancer Center nurse asked us to come right over.  She had looked at his blood work to see that his Potassium was way down.

So, he got his Velcade injection, followed by a 2-hour infusion of Potassium and liquids.  (Saline)  Our Oncologist was on vacation (again), so one of his associates gave him a prescription for daily Potassium supplements.

He felt GREAT last night.

He felt GREAT this morning.  Got out of bed, made his own breakfast, watched television, then got up, started to walk and got dizzy.

There’s no doubt that his blood pressure dropped and he was too much in a hurry to get moving.  So.... he’s promised me that he will sit for awhile.  Slowly stand for awhile.  THEN walk.

So, this is all very frustrating, but we seem to be getting somewhere with the Potassium and Fluid infusions.  And happily, there seems to be a better communication with his health care team.

Back to the Cancer Center on Friday morning for Velcade, then he's got the next week OFF.  YAY!

Update on Dom

It’s been a rough week.

Dom’s 3 1/2 inch lesion is on his LEFT HIP.

This week, his RIGHT HIP started killing him.

I sent an email to our liaison nurse at the Slidell Cancer Center on Wednesday afternoon to request an MRI.  (Which is how they found his hip lesion)

She didn’t bother to return my email or call us.

Went to Slidell for his chemo on Friday.  Dom went into our doctor’s office to bitch.

Doc was OFF for the day.  Apparently, there were NO doctors on Friday.

He said that he wanted an MRI-  now!

Finally, one of the nurses told him to go the Emergency Room.  They would be expecting him.

Sure enough, they got him into a room quickly.

TWO HOURS LATER, the ER doc said that they had FINALLY got a hold of his Oncologist.  Said that there was no need for an MRI until next week.  The ER doc apologized for the lack of communication. (He was a sweet guy-  loved him)

It turns out that our liaison did, in fact, see the email.  Apparently ignored it.

When we Igot home, there was a phone message from her, asking how it went today.  You think I’m going to return her call?  NO EFFING WAY.

So, MRI is scheduled for Tuesday.

We switched from NOLA to Slidell for convenience.  We're having 2nd thoughts.  Going to see our Tulane Oncologist on August 31st.  She'll decide if he's ready for the SCT after doing a bone marrow biopsy and check his M-Spike.

'Practice Changing' MRI Recommendations in Multiple Myeloma

The International Myeloma Working Group (IMWG) has issued practical recommendations on the use of MRI in patients with multiple myeloma (MM) and in patients with asymptomatic disease, such smoldering MM and monoclonal gammopathy of undetermined significance (MGUS).

                                               >SNIP<

For smoldering MM, the consensus statement recommends "that patients with more than one unequivocal focal lesion (diameter of >5 mm) should be considered to have symptomatic myeloma that requires therapy (grade B). Patients with equivocal focal lesions should repeat the MRI after 3 to 6 months, and in cases of MRI progression, patients should be considered as symptomatic patients who need therapy (grade C; panel consensus). The biopsy of such lesions should be encouraged. Regarding diffuse MRI marrow pattern, we need additional studies before its incorporation into the definition of symptomatic myeloma."

For MGUS, the statement notes that "WB-MRI identifies patients with MGUS with focal lesions that possibly reflect infiltration by monoclonal plasma cells in the bone marrow. These patients seem to have increased risk of progression to myeloma. To date, MRI is not recommended as part of the routine workup for patients with MGUS unless there are clinical features that increase suspicion."


For MM, the statement explaines that "MRI is the imaging gold-standard method for the detection of bone marrow involvement in MM (grade A). We stress that MRI detects bone marrow involvement and not bone destruction. MRI of the spine and pelvis can detect approximately 90% of focal lesions in MM, and thus, it can be used in cases where WB-MRI is not available (grade B). MRI is the procedure of choice to evaluate a painful lesion in patients with myeloma, mainly in the axial skeleton, and detect spinal cord compression (grade  A). MRI is particularly useful in the evaluation of collapsed vertebrae, especially when myeloma is not active, where the possibility of osteoporotic fracture is high (grade B)."

MUCH MORE here