Time for an update

I thought I’d write a quick update for people on here as it’s been a busy couple of months since I explained about coming off maintenance therapy and I haven’t really had a chance to let people know anything. We’ve been busy renovating the downstairs living room and thankfully are only a couple of weeks off completion now!

So, my last medical update was about being taken off Revlimid (my maintenance therapy). I’ve been off it for 3 months now…the first results weren’t too bad and my figures only went up by 0.5. Last month though, they went up by 2 which is faster than I’ve had it change over the past 7 years. It means that next months figure will be really important in my consultant making the decision as to what happens next and whether I start on the Myeloma XII trial which I have been given information on.

It is a really strange one – to feel that they took me off a drug that was keeping my progress slow and steady, resulting in it speeding up and potentially me needing treatment even sooner! I don’t quite understand how that makes sense for anyone except the drug company who no longer have to fund my drugs (they payed for them whilst I was on the Myeloma XI trial). I am wondering about challenging the system and asking for them on ‘compassionate grounds’ which apparently you can do. I need to look into what that means and how I would go about it, but surely if you can prove that a drug keeps you in some form of remission, that is more cost effective for the NHS than paying for a Stem Cell Transplant for me?

So, unless I can arrange for that to happen, it looks like I may well be back on treatment by the summer which would suggest a transplant at Christmas – not really what I want at all but if by getting in there early it stops me from suffering any type of bone or kidney damage, then I’ll have to go with it. We’ve thought about it lots over Christmas, as you’d expect. I maintain the fact that I’m majorly lucky to have been in remission for so long, and to have avoided complications. But, I’m absolutely gutted that, from being a healthy 43 year old who plays netball, racquetball and runs my own business, I will have to give up the sport etc and make myself so ill that I can’t function for 4 – 12 months. What a choice to make. It sounds strange, but in some ways when people are ill or suffering symptoms, the decision to go into a chemo regime feels like it might be easier.

The kids do know a little of what is going on. We weren’t going to tell them much until we knew I needed treatment to start, but then Sam started asking very specific questions about my health. We’ve always promised to tell them the truth and so we had to tell him that I’d been taken off revlimid. Of course that led to questions about the ‘what next’ so they do now know what could be on the cards. I think perhaps that’s for the best anyway – it gives them time to get their heads round it and I’m sure they’ll need that just like we do. It also means that if they stumble across my blog, that they won’t read anything on here that comes as a shock to them.

In the meantime, we’re taking the time to regroup and work out how 2019 might look for us. We had hoped to go away somewhere, but I think now, we will look at camping and prioritising getting our bedroom turned into an ensuite to help with the treatment process. I’m so pleased we’ve nearly finished the renovation of the living area as that means we have somewhere to enjoy and to have as ‘our’ part of the house (the rest is very dated). On top of that, it’s time to get back into doing things as a family….the poor kids have been very neglected during this whole house business, so we’re looking forward to more dog walks in the Clent Hills, more board games and generally more time together.

Next update probably won’t be until after the next lot of bloods…..I’ll be counting the days 😦

Beginning a new journey?

I’m writing this early in November but won’t be posting it for a few days. The reason being I still haven’t had a chance to talk to Nick as he’s in San Francisco with work and I don’t want to burden him with anything. But I wanted to get my initial feelings down while they’re fresh.

On Thursday, I had my routine hospital appointment. Every month I have to go as I’ve been on a trial where I’ve been given a drug called Revlimid as a maintenance therapy. I’ve now been taking it for 7 years and I honestly believe it has helped to keep me in remission.

I knew when I walked in the door that something wasn’t quite right. My consultant wasn’t quite as smiley and I could see a graph on his desk rather than my usual prescription script. It’s not necessarily a major concern but now that my paraprotein (which is what they use to measure my myeloma) has gone over 10, the clinical trial has refused to keep giving me revlimid.

I’ve known the day would come but had sort of imagined that it was still a while away and that I’d see some more rises in my paraprotein first.

So, what does it mean? Well it seems that we’ll still be playing the waiting game for a while. If it only rises by 1 every couple of months nothing will change. However, my consultant has said that coming off the revlimid may result in my figures rising faster. If that happens, I’ll be back to treatment. Now that wouldn’t worry me normally apart from the fact he gave me the details for a new trial! Which suggests to me that he’s expecting me to need this treatment sooner rather than later! Although I hope I’m just reading into things.

I don’t really know how I feel. When he first told me I was very much thinking how lucky I’ve been to have this long in remission. How I shouldn’t be too upset as it’s all been so good. How I’ve benefitted in a way other myeloma patients can only dream about. But the last couple of days I’ve struggled a bit. Memories have come back of how much weight I put on from chemo … and even more, how wretched I felt after the chemo and the transplant. I’ve enjoyed so many years of being healthy, I don’t want to go back to that. I’m nervous of what it’ll mean for the family. For my netball and racketball. For my business. For everything.

IF all goes as well as last time it’ll be 2 years of treatment and recuperation. But I’m a bit scared to believe it will be that easy a second time. Myeloma doesn’t tend to be predictable and tends to come back differently each time.

But I know I’m getting ahead of myself. The next few months will be key to seeing how things progress. So keep your fingers crossed for us that the revlimid was more of a placebo than anything else, and that the next few months go ok.

While all this is going on we’re bang in the middle of renovating our house. In the week that this has all come up, not only has Nick been away but we’ve taken 2 walls down, pulled up 3 rooms of floorboards and pulled our downstairs apart! Still, it’s actually kept my mind off worrying so hopefully it’s been a good thing for it to be happening now.

Out in the cold

I just read an article mainly about the cost of Revlimid in the U.S.A. and the “games” that Celgene, the maker of Revlimid, has been playing in order to prevent it from becoming a generic drug.

The article tells the story of Pam Holt, a myeloma patient and retired educator, who pays $640 a month in order to take Revlimid: http://goo.gl/LHa5Jn

Having myeloma is hard enough, but being forced to go into debt in order to have conventional treatments is simply OUTRAGEOUS.

The greed of these big drug companies has to be stopped…

I consider myself extremely lucky to live in a country (Italy) where nobody has to pay a cent for their conventional treatments. It should be the same in every country.

Dom is a Hurtin’ Little Cowboy

Well, gang-  This Velcade/Revlimid treatment has really clobbered him.

Over the course of 8 days, he was admitted to 2 separate hospitals overnight.

His neuropathy started traveling up his legs, just below the knees.

He gets extremely dizzy and almost falls down.

Blood Pressure is either very low or slightly elevated.

He’s seeing flashes of light.

He’s now walking with a walker.

His hands are starting to go numb.

You get the idea-  he’s a MESS.

So, his Slidell Oncologist took him off of Chemo.

We’ll be heading to Tulane Cancer Center soon.  We have an appointment for the 31st, but they’ll probably want him in there sooner.

(Thalidomide was like a walk in the park compared to this treatment!)

ANOTHER UPDATE on Dom

Dom is having a pretty rough way to go during this treatment.  Actually, Thalidomide was like a walk in the park compared to Velcade, Revlimid and Dex.

His blood pressure is all over the place.  He’s been on blood pressure medication for many years.  Our family doctor took him off of it while he’s going through this.

A typical morning:

Gets out of bed at 8 am.  While watching television, sitting on the couch, his blood pressure is 130/80.  GREAT.

Gets hungry.  Walks with his cane 20 feet into the kitchen.  Grabs a bite to eat, then hobbles back to the couch.  Starts feeling woozy.  Blood pressure has dropped to 60/something.

An hour later, blood pressure returns to normal.

He cannot function with these fluctuations.  He’s also getting flashes of color in his peripheral vision from time to time.

I’m doing all of the driving.  We’re both very tired.  Drive into Bogalusa, LA every Monday for lab work.  Velcade injections in Slidell on Tuesdays and Fridays.  Drive into NOLA to see Dr. Safah at the Tulane Cancer Center every couple of months. Monthly infusion of Zometa.  Here’s a look at this month:

So, we’re hanging in there and sure looking forward to finishing this treatment and get on with the transplant.

A Patient Update

Dom will be finishing his 4th week of Chemo on Friday…. then off for an entire week.

This Velcade and Revlimid have been tough on the poor guy.  His blood pressure got very low, so he cut way back yesterday.

Needless to say, heads exploded at the Cancer Center today.

So…. tomorrow, our ONLY day off this week, we’re headed BACK to Slidell to see our Dr. Culasso…  to get a handle on his blood pressure and our annual check-ups.

We have an appointment at our Tulane Oncologist, Dr. Safah on Thursday.  She’s the one who’s calling the shots.  Slidell is much more convenient for us, but Tulane will be harvesting the Stem Cells and performing the transplant.

Dom gets SO tired, has dizzy spells, has to lay down at times.  This has been rough on him.  The Thalidomide 9 years ago was like a walk in the park compared to this.  (Of course, he’s 9 years older, too!)

So… thanks for your continued prayers and positive vibes.  We’ll take whatever we can get!

All is GREAT Here!

Dom woke up, took his Revlimid and Steroids (Dex), and we drove into Slidell.  Got his Velcade injection and his drip of Zometa…. very quick… in and out in no time at all.

Our patient feels better than he has for a week.  Using 2 crutches today, but getting around well.  Even his voice sounds chipper.  Thank God.  (he does the steroids on Tuesdays…. I wonder if that has something to do with it????)

We have 2 days off.  Back to Slidell Cancer Center on Friday for Velcade shot, then off of chemo for a week.

Daughter Christine is flying in on Saturday.  YAY!  Fun, fun gal!

Our A/C guy was here for about 3 1/2 hours yesterday.  The old fella that wired this house had Alzheimer’s.  Apparently, he was confused with the air conditioning.  Our guy got it working and will return tomorrow to finish the job.

SERENITY NOW!  – Frank Costanza (Seinfeld)

A Progress Report- E.R. Visit

Dom started his Revlimid on Monday.  His hip felt OK…. hurt, but nothing horrid.

Went in Tuesday for his first Velcade injection…. in and out in no time at all.  Also took 5 Steroids.

Wednesday morning rolled around and he couldn’t walk.  Struggled with 2 canes.  Dr. Cal. told us to get to the ER in Slidell.

We were very impressed.  I’ve always been a fan of the “other” hospital in Slidell, but these folks were great.  Before they even got him in a room, they did x-rays and blood work.

Thank God, not a broken hip.  Cannot explain it.  Gave him a Percoset, then came back to our room to “give him a test drive”.  BIG DIFFERENCE!

Going locally for Blood Work tomorrow, then back to the Cancer Center on Tuesday for Velcade and ZOMETA for the first time in years…  (bisphosphonates to heal his lesion)

Zoledronic acid belongs to a class of drugs known as bisphosphonates. It lowers high blood calcium levels by reducing the amount of calcium released from your bones into your blood. It also works by slowing the breakdown of your bones by cancer to prevent bone fractures.

Had a very pleasant weekend.  I boiled up a couple of pounds of Shrimp yesterday.  My patient stayed in bed all day.  (as well as Thursday).

Today was a celebration of Father’s Day, as well as a belated birthday celebration for me.  Lobster Tails, Snow Crab, Sweet Corn and Baby Yellow Potatoes.

OH, YEAH…. OUR CENTRAL AIR WENT OUT THE OTHER DAY.  When it rains it pours!

And So it Begins…….

Hi gang-

We had a rough couple of weeks dealing with securing Dom’s Chemo medication, but we’re all set now.

He took his first dose of Revlimid this morning.

Will be getting his Velcade shots on Tuesdays and Fridays…. 2 weeks on- 1 week off.

Daughter Christine just booked a flight for our “off week”.  Yippee.

Apparently, the VA is “farming out” patients to private practice doctors.  At the end of this month, we’ll head to Pascagoula, MS for our VA Disability Claim.  The alternative was a doctor in NOLA.  NO THANKS!

So….it’s all falling into place!  Thanks for the prayers and calls!

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.