And So it Begins!

We went to the Tulane Cancer Center yesterday to visit Dr. Safah.  She recommends that we continue with Darzalex, but add Pomalyst and Dex to the treatment.

https://www.myeloma.org/treatment/current-fda-approved-medications/pomalyst-pomalidomide

We just had a phone call from Celgene's liaison, Kroger.  They're delivering the chemo (pill form) on Friday afternoon.

Daily for 21 days, then 7 days off.

Meeting with Dr. Calabresi in Slidell on Tuesday, and will probably start the Pomalyst on Wed.

As usual, we're extremely hopeful.

Thanks for the kind words and prayers!

Nan and Dom

Had Another ER Visit

Dom came home from about a week in the hospital on Thursday afternoon.

He basically stayed in bed on Friday and Saturday.

I was certain that he needed another blood transfusion, or his creatine levels were out of wack, so took him to the ER on Sunday morning.

Over 8 hours later, he was sent home.

His blood was good, and his creatine levels were good.

His attending physician, Dr. Mercadel said that the Samonella and the hospital stay last week wiped him out.

Heading to the Tulane Cancer Center in the morning.

The Latest on Dom

These were Dom's latest numbers 2/27 at Tulane.   The second set is from Slidell Cancer Center on 2/7.  The numbers in parentheses are from November 2018.

WBC:  7.3   6.5  (8.3 three months ago)

RBC:   4.1   3.9   (3.71)

HTC:    38.7    39.4  (36.3)

PLATELETS:   170   154  (188)

KAPPA Light Chains:   10,5   11.4  (16.5)

LAMBDA Light Chains:   176.5   119.9  (36.4)

RATIO:   0.6    0.10  (0.45)

M-Spike:    1.7   1.3  (Not Observed)

Dr. Safah at the Tulane Cancer Center in NOLA saw us last Wednesday.  She took blood.  Had us follow up today with our Slidell Oncologist.

He's ordering a full body CT Scan with no contrast and a bone marrow biopsy.  Hopefully next week.

Dom is a hurtin' little cowboy.  Ribs, back, shoulder, neck.  You name it.

So... after the CT results come in, they've decided to put Dom on DARZALEX.  It's not chemo.  It's an IMMUNOTHERAPY.

I joined a Facebook Group for Darzalex support, and the members have been SUPER helpful.  Most of them rave about the drug! 

So, we're feeling very positive.

The docs are laying the groundwork for insurance, then full-speed-ahead. 

Thanks for the continued prayers and good vibes, gang.

Dom's Feb. Numbers

These were Dom's latest numbers.  The numbers in parentheses are from November 2018.

WBC:  6.5  (8.3 three months ago)

RBC:   3.9   (3.71)

HTC:    39.4  (36.3)

PLATELETS:   154  (188)

KAPPA Light Chains:   11.4  (16.5)

LAMBDA Light Chains:   119.9  (36.4)

RATIO:  0.10  (0.45)

M-Spike:  1.3  (Not Observed)

The M-Spike concerned us, but Dr. Calabreze wasn't concerned, as his Light Chains look so good.

He did ask us to make an appointment with Dr. Safah at the Tulane Cancer Center to get her feedback.  She can't get us in until late March.

Soooooo...  rolling right along here.  *sighing*

Dom's AMAZING Week

This week has been full of surprises.

On Monday he complained to his Slidell Cancer Center doctor about his neuropathy acting up again.  It's slowly creeping up his leg.  Also the backs of his hands.

Dr. C. canceled his chemo and asked us to go to see Dr. Safah at the Tulane Cancer Center in NOLA.  (These 2 doctors work hand-in-hand, but Dr. Safah calls the shots.  We've elected to get treatments in Slidell out of convenience)

We happily got an appointment with Dr. Safah on Tuesday morning.

She was puzzled about the neuropathy, saying that Kyprolis RARELY causes neuropathy.  We told her that we didn't want him back in a wheelchair.  She understood that.

I said, "Doc-  his numbers are great.  The radiation shrunk the lesion (Plasmacytoma) to 20% of its original size.  Does he REALLY HAVE to have more chemo?"

She looked at his most recent numbers.  No M-Spike.  And much to our delight gave him the summer off of chemo.  She did another M-Spike test and wants us to have another in 3 months.  Just keeping an eye on it.

(The only reason that he was back on chemo was that solitary plasmacytoma on his left hip)

So, we're hopeful that it'll be another 8 years of remission and that no rogue cancer cells create problems for him.

That was our Christine's last day here.  She had been carting us around in her rental car.  We thought we'd go to one of our favorite joints, Crossroads Seafood and Grill, on the way home.

Dom had gotten a fried pork chop there about a year ago.  He said, oh wouldn't it be great if they had a pork chop lunch special?

We arrive.  We walk in.  LUNCH SPECIAL:  Fried Pork Chops!

We told the owner our wonderful news before being seated.

Had a delicious meal.  When we got the check, it was for ZERO.  The owner picked up the tab.  She's done that now THRICE.  What a doll!

So... it was a VERY GOOD DAY. 

That night, I found out that I had $100+ in unclaimed dividends sitting in Louisiana. WOW!

The stars were aligned!

An Update on our Patient

We had to drive into NOLA for a visit with Dr. Safah at the Tulane Cancer Center.

Over the summer, his blood pressure dropped dramatically from the Velcade and Revlimid.  They took him off of his blood pressure medications.

All was well for months.

Flash forward to yesterday.  It was SKY HIGH.  Again at Tulane today it was around 180 over something.  An hour later it was 160 over something.

So, Dr. Safah wants to get his blood pressure normal before any new chemo.

We have an appt. with our family doctor tomorrow morning, then a meeting with our Slidell Oncologist shortly after.

Once again, Dr. Safah is calling the shots.  We go to Slidell for treatment out of convenience.  The new plan is Kyprolis and Dex.

Once his blood pressure is normalized, they'll begin giving him infusions of KYPROLIS:

KYPROLIS Info HERE

He'll be taking that along with Dex.

Wish us luck!

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.

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!

It's Been ROUGH Around Here

Dom's neuropathy has gotten so bad that he's now in a wheelchair.  He can't feel his feet.

A dear friend, Richard McM came over to build a wheelchair ramp for him.  Unfortunately, Dom is using my dad's old wheelchair-  probably 30 years old and HEAVY.  I can barely move it into my car.

On Wed., we had an appointment with Dr. Safah at Tulane.  She's going to arrange for a few weeks of physical therapy to get him walking again, then putting him back on a different chemo. She said that besides the neuropathy, his muscles have atrophied after a couple months of inactivity.

We came home very hopeful-  feeling positive- happy to be back with Dr. Safah.

We stopped to get some food to go on the way home.

Dom went to bed after eating.

I noticed that there was a message on the answering machine.

It was Dr. Safah's nurse telling us to get to an emergency room IMMEDIATELY.  His sodium was "critically low" at 120.  (Hyponatremia)

So... off we go to Our Lady of the Angels ER in Bogalusa, LA-  about 15 miles away.

The ER doctor told me to go home, as he would be admitted.

They finally put him in a private room at about 10 pm.  By that time, his sodium had dropped to 119.

They pumped him full of sodium and released him last night once he reached 130.

Got home around 7:30 pm.  He fell TWICE last night using a walker.  He cannot feel his feet or calves.

So, now I'm working on getting him a wheelchair.  Hoping that Tulane will do it.  He called our VA Rep this morning, and she said that if he got an appointment with the VA  (ha-ha), they'd pay for it.

I'm waiting to hear from Dr. Safah's folks to obtain a lightweight wheelchair that I can lift for him.

So-  kinda "gloom and doom" here.

Thanks for your continued prayers.

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.

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.

Dom's CONFUSING September Numbers.

Just got the call.  His numbers are jumping all over the place.  (My opinion, not the doctor's)

Some background:  For years, his M-SPIKE was ZERO.

Last summer, it jumped up to .3 and stayed there for almost a year. (blood work results)

6 months ago, it jumped up to .6  (blood work results)

3 months ago it was at .8  (blood work results)

At this point, Dr. Safah ordered a Bone Marrow Biopsy.  The reading was only 0.2 and were were all happy about this.

Fast forward to this month:

M-SPIKE 1.0  (blood work)

We have been going to a Slidell oncologist out of convenience, but have an appointment with Dr. Safah at TULANE in December.  I just don't know what to think about this.  The bone marrow biopsy is a more definitive test than blood work.

His LIGHT CHAINS are weird, too.

Normal levels of serum free light chains are:
• Kappa: 3.3–19.4 mg/L
• Lambda: 5.71–26.3 mg/L
• Kappa/lambda ratio: 0.26–1.65

His March numbers were:
*Kappa:  25.67
*Lambda:  28.00
*Ratio:  0.91

September found us at:
*Kappa:  12.8
*Lambda:  0.6
*Ratio:  2.12

I'd be delighted to get some feedback from you guys.  TIA.

Dom's October Numbers

Well, I've learned that Dom is not to be trusted in making his own doctor appointments.

It had been 5 months since he had bloodwork.  Dr. Safah was a bit irritated.  (I was in Florida during his last appointment, thus he made his newest one)

WBC   8.7

HCT     39.6  ( a little low.... should be 41-54%)

PLT     208

ANC     60

M-SPIKE and Light Chains coming later this week

Predictor for Multiple Myeloma (MGUS)

Hi gang-  Thought this might be of interest to some of you.  When Dom was first diagnosed by a local Oncologist, the guy said, basically, "Don't worry about it.  It's just MGUS... we'll keep an eye on it".

Thankfully, he'd sent Dom's blood work to the Tulane Cancer Center.  About a week later, we got the word that it was, indeed, Multiple Myeloma.  We promptly quit going to the local dude, and have stuck with Tulane for all of these years.  Love the doctor and love her staff.

Link to following story :

Patients with a high level of a specific protein in their blood have an increased risk of developing multiple myeloma.

Doctors at the Mayo Clinic have been studying a group of 1,384 patients with a blood condition called monoclonal gammopathy of undetermined significance (MGUS). This is already known to be a precursor to the blood cancer, multiple myeloma. But till now it’s not been clear which patients are most at risk of progression to cancer.

Patients with MGUS have a protein in their blood called monoclonal protein (M protein). The Mayo study shows that those with higher levels are more likely to develop cancer. Those with the lowest levels of M protein have a progression rate of 14 per cent over 20 years, while the risk is 60 per cent over 20 years for those with the highest levels.

MGUS is present in two per cent of all Americans aged 50 or over and is usually detected during a routine check. The researchers don’t recommend population screening for MGUS, but say that those who are found to have the condition should be carefully monitored for M protein during their life – then any cancers which are detected can be treated as early as possible.