…Go – DVD therapy begins! Week one

So after months of talking about this I’m off. I started my chemotherapy yesterday and am on Darathumabib, Velcade and Dexamethasone as my main treatment with a bit of zometa and a nice little selection pack of other drugs from the sweetie shop!

Still working!

Darathumabib infusion

Just a few of the additional drugs!

But the good news is that I haven’t suffered from any of the side effects I’d been warned of. I’ve got the dry mouth from the dex that I got last time round, but none of those from the cytokine release syndrome. That’s great news as it means that

1. I feel good (!) and can even do a bit of work when the WiFi works

2. I won’t need someone with me in the hospital when I come back every week

3. Hopefully the kids will get to enjoy some of the summer!

Now it’s still early days and there is a strong chance that symptoms may build up as chemo in my body builds up its residue (does that even make sense?). I’m also being given zometa again and that has always given me a fluey feeling a few days later – it’s also the drug we were convinced made me more susceptible to broken bones but maybe since I’ve had to give up sport for now it won’t be a killer.

So now it’s about keeping well. If you’re local and visit, Nick and I would like to remind everyone that I need to avoid anyone with any form of illness however minor it might seem to you. I’d much rather you asked me and we had to cancel plans, than you waited till we’d said hello, had a hug and then you tell me and I come down with something. The reality, as harsh as it sounds, is that any illness you have, I could have exacerbated, lasting longer and even hospitalising me.

I’ve got my first complication already as my dad had a nasty fall last week and has been admitted for a broken thigh bone. I got to see him on Sunday when he first went in but he was high as a kite and asleep on morphine. I really want to go back after his op tomorrow but will have to see how I am and will have to wear a mask. It’s the only exception to the rule that I will make – so relieved that he has got through the implications of the fall and just wishing him tonnes of love for the operation which is pretty major for an 87 year old. I just need to see him again now.

Dom is a "Hurtin’ Little Cowboy".

We had a Necrosis of the Jaw scare a couple of months ago.  He had a tooth pulled on the RIGHT side of his mouth, then his Oral Surgeon went to work under the gums.

One week later, our follow-up visit went well.  A LITTLE pain, but felt much better.

Skip to last week-

The LEFT side of his jaw started hurting.  By the time the weekend rolled around, he had a difficult time opening his mouth to eat.  It was all swollen, HARD and painful.  *sighing*

His oral surgeon looked at it yesterday, took a mouth x-ray, and had no idea what was going on.  It didn’t show any infection, no fluid, and no bone problems.  He was fairly certain that it isn’t a DENTAL problem.

Wouldn’t you know it-  He sent us to a local Emergency Room in Mandeville, LA.

We were there, of course, for HOURS.  They did a CT Scan using dye-imaging of his mouth and neck.

NOTHING was out of the ordinary.

Our great ER doctor called up one of his associates to take a look.  They were both baffled.  (We loved our Doctor over there!).

They THINK that it’s some type of “FIBROSIS of the Connective Tissue”.  (his skin).  It COULD be “NECROSIS of the Jaw”.  (his bone, but they don’t think so).  Dom has taken Zometa, a bisphosphonate that can cause Osteonecrosis. 

They sent us home with pain pills, antibiotics, and the recommendation for an Ear/Nose/Throat doctor in the area.  He couldn’t get us in until next Tuesday.  *sighing*

So, we’re “ROLLING RIGHT ALONG”, Gang.

Wishing everyone a very happy Thanksgiving!

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A New Scare- Osteonecrosis of the Jaw

The last couple of days were worrisome.  Dom had a bad tooth and had been taking antibiotics.  Our dentist wanted us to see an oral surgeon yesterday.

He spent a lot of time telling us how Bisphosphonates (In Dom’s case ZOMETA) can lead to “DEAD JAW”.

We could either wait for the tooth to fall out or have a simple extraction.

He went on to say that by pulling the tooth Dom had a 1 in 4 chance of developing Necrosis.

We made an appt. with the surgeon for Monday morning.  He was planning on sedating Dom. 

We were a little leery about the sedation, so drove up to our local dentist who saw us immediately.  (Gotta love small town physicians!).

I handed him the paperwork from the surgeon.

He said, “Hell!  You don’t need to be sedated.  This is a simple extraction.  Come on back, I’ll pull it now!”

So…  We dodged the bullet but we have to keep an eye on his mouth.

Here’s more about Osteonecrosis of the Jaw:

Bisphosphonate-related osteonecrosis of the jaw (ONJ) is characterized by nonhealing exposed bone in the maxillofacial region in patients who have undergone bisphosphonate treatment. The underlying etiology is unclear and may be multifactorial. The diagnosis is primarily clinical. Diagnostic tissue sampling may exacerbate the process and is typically avoided, necessitating other diagnostic approaches. The appearance of ONJ at diagnostic imaging is variable and includes sclerotic, lytic, or mixed lesions with possible periosteal reaction, pathologic fractures, and extension to soft tissues. There is a spectrum of signal intensity changes on T1- and T2-weighted magnetic resonance (MR) images with variable enhancement, findings that may correspond to the clinical and histopathologic stage of the process. Bone scintigraphy is sensitive with increased uptake in the area of the lesion. Although the imaging findings are nonspecific, there appears to be a role for imaging in the management of ONJ. Radiography is relatively insensitive but typically employed as the first line of radiologic investigation. Computed tomography and MR imaging are more precise in demonstrating the extent of the lesion. A number of imaging modalities have revealed lesions that may be associated with bisphosphonate exposure in asymptomatic individuals or in the context of nonspecific symptoms. The risk of these lesions advancing to overt clinical disease is unknown at this time. The radiologist should be aware of ONJ and include it in the differential diagnosis when evaluating patients with a history of bisphosphonate therapy without jaw irradiation, so as to avoid potentially harmful biopsies.

More Here

Dental Care Steps to Prevent and Treat Osteonecrosis of the Jaw

Everyone can benefit from good oral hygiene, but people with cancer need to pay particular attention to their dental health because of side effects associated with certain treatments. 

Osteonecrosis of the jaw (ONJ) involves dead bone in the jaw that becomes exposed after a tooth extraction or, in some cases, from a denture rubbing against the skin in the mouth.1 ONJ may also be caused by radiation of the head and neck, chronic steroid use, herpes infection in very ill patients, uncontrolled infections, and major trauma.2

Scientists do not yet know all the causes of ONJ or how often it occurs.3 The few studies on the risk of developing ONJ suggest the risk is low for patients on bisphosphonate therapy.2 Although ONJ has been uncommon in patients receiving treatments for cancer, including bisphosphonates, chemotherapy, and radiotherapy, researchers believe trauma may limit the ability of teeth and gums to heal due to the effects of bisphosphonate therapy.3,4

“Osteonecrosis can cause severe pain,”  says Joel S. Teig, DMD, a  board-certified oral and maxillofacial surgeon in practice for more than 20 years. “It can spontaneously develop with or without dental treatments, although dental extractions or other dental surgeries, like periodontal surgery and dental implant surgery, can dramatically increase the chance of its development.”

Dr. Teig suggests that patients be aware of potential symptoms of ONJ, such as pain; loose teeth; numbness of the jaw, lips, and chin; fluid or pus drainage; and exposed bone and gums that don’t heal (frequently with dramatic gum recession).  “Initially, just a dull ache or recession of reddened gums may occur,” says Dr. Teig, “but if not recognized and diagnosed for what it is, osteonecrosis and its potentially devastating symptoms can quickly expand.”

Cancer patients should maintain good oral hygiene and have a dental exam with preventive dentistry before treatment with bisphosphonates.5 An expert panel, comprised of oncologists, oral surgeons, and other specialists, published its recommendations in the Journal of Oncology Practice. The panel’s first suggestion was that patients complete any dental treatments and procedures that require bone healing before initiating IV bisphosphonate therapy. The panel concluded that for patients currently receiving bisphosphonates who require dental procedures, there is no evidence to suggest that stopping bisphosphonate therapy will prevent or lower the risk of ONJ. Instead, they recommended frequent dental visits and conservative dental management for these patients. For treatment of patients who develop ONJ, they strongly recommended a nonsurgical approach.6

“The most important thing a metastatic cancer patient who is taking bisphosphonate medications needs to do is to be attentive to his or her oral health. Brushing and flossing of their teeth, along with the use of an antibacterial mouth rinse twice a day can help reduce the chance of developing the need for invasive dental treatments that could potentially stimulate osteonecrosis development,” Dr. Teig stresses. “Metastatic cancer patients must see their dentists regularly for simple cleanings, repair of dental decay, and evaluations to nip potential dental degenerations along with any bony changes seen on x-rays,” Dr. Teig warns.

“The confirmed clinical benefit of bisphosphonates in cancer patients outweighs the potential risk of developing ONJ,” the panel concluded. Trials will be needed to evaluate the true incidence and clearly establish what really causes ONJ in cancer patients.


Increased awareness of this potential problem is the key to prevention and to better treatment for patients with bone metastases.6 Cancer patients who are aware of potential side effects from treatment put themselves in a better position to receive the best possible care.

https://www.onclive.com/web-exclusives/dental-care-steps-to-prevent-and-treat-osteonecrosis-of-the-jaw




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!

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!

Nothing is Forever – except a cancer diagnosis

Once you have been diagnosed with cancer, life changes forever. For you and for your family, it is unlikely that you will ever look on life in the same way. Sometimes that can be amazingly positive, and sometimes, sadly, it is soul destroyingly awful. Whether you get through treatment and survive, whether you get through treatment and relapse, one thing is true….a cancer diagnosis is one of the few things that is forever.

I think I would be right in saying that in general, Nick and I have been massively positive in how we have lived our lives since I was first diagnosed with myeloma in 2009. It was obviously a massive upheaval to our lives in the early days, and hugely scary to think that our children might not get many years with me. But, as we went through the treatment regime, we got stronger and stronger together. I think we learnt to accept the myeloma as part of our lives, and for me, I did my fundraising as a means of controlling it. And in the main, my myeloma is NOT my life….it is just that unfortunately it has a nasty way of getting away of my life when I don’t want it to.

I will always remember a strange part of the journey where I just wanted the treatment to start – I wanted an end to the ‘unknown’ and I thought that once I had my chemo and transplant and had recovered, that life would go back to normal. Little did I realise, that the ‘unknown’ never really disappears with myeloma, you never quite get to sit back and totally relax, especially when you are at hospital on a monthly basis for your maintenance therapy. But even without that, I would imagine us mm patients aren’t unique in the fact that the word cancer is always there, hidden, in the back of your mind and in the way you make decisions.

In fact, you end up living with a kind of guilt and frustration that are hard to put into words but I am going to try to.

I know, from the bottom of my heart, that I am REALLY lucky to still be here today to write this. I know, that when I was diagnosed 8 years ago, that I thought I would have gone by now. I know that I have said goodbye to too many myeloma friends that I have met on my journey, who have not had the positive response to their treatments, that I have had. I know that my life is pretty good when I take that all into account.

But I sit here writing this feeling nearly as sad as I have done in a long, long time. Why? I am ill again. Not badly ill, but ill enough to lay me up at home for a number of days (expected to be at least a week) and to make me dependent on Nick and the kids for everything. This comes on the back of looking after my son having the same thing for two weeks and at the same approximate time, breaking a bone in my foot for the 3rd time in 2 years.

The reason for these things? Well, my immunity is permanently low due to my maintenance therapy and my myeloma so I pick things up pretty easily. Whilst I am much more relaxed about being around people these days, I still rely on people to make sensible decisions about seeing me when they or their kids are ill…otherwise it can lay me up – and that isn’t fair on me or the family. And my breaks? Well, I still that they are due to the bisphosponates I was on for so many years….but I’m no expert.

The reason I thought I’d write is because I want to help people to understand how hard it is to live with cancer ‘under the surface’. To everyone around us, I am now pretty healthy…and I am in comparison. I look well. I smile (most of the time!). If people ask how I am, I rarely talk about the myeloma anymore. But behind it all, Nick, the kids and I, have to deal with so much more on an ongoing basis.

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I am lucky to have the most supportive husband I could ask for. He drops everything when I am ill or hurt and makes sure he is there for me. But this time, I think it has hit us both emotionally and we are both exhausted from what this life means for us at times. I think we want to think life is normal again, but the reality is that ‘normal’ isn’t what it once used to be….and I don’t like the new normal that much. I’m someone who is active and on the go all the time, but if I do that now, it makes me ill and the family suffers. I’m not sure how it impacts the kids…..they don’t really talk about it, but I see them so concerned when I am laid up in bed with a temperature, again. I think they’re ok. I dearly hope they are.

Even with work I find it so frustrating. Given how much I have been ill/ injured in the last couple of years, I can’t think of many companies who would take on someone who worked like that. And if I take on a role that is too stressful, it makes me ill. So I’m trying to set up my own business doing social media and admin pieces for small businesses who don’t want to do their own….fingers crossed that doesn’t lead to more stress than is good for me. The reality is there is no ‘standard’ job out there for me that works though, so it is this or nothing….and that feels hard in itself.

And all of this is with the knowledge that my paraproteins are very slowly creeping upwards. They are so slow it will probably be a couple of years before anything needs looking at, but unless you are living with that, it is unlikely that you can begin to understand how that plays around in your head with every decision that you make. One minute I’m talking about us in our retirement together and the next we’re having a reality check and discussing the alternative if we knew we only had another ten years together……..an eye opening discussion I can promise you…which limits Nick massively, as well as me.

But if you ask me next week how things are, I’ll likely tell you it’s good, smile and carry on….

My myeloma pharmacy

So, recently a few older friends of mine have asked what’s going with me and my myeloma, and whether I am still on drugs!

Luckily, the answer is that not an awful lot is happening with my myeloma. I am still classed as being in ‘Very Good Partial Remission’ and my paraprotein results (the measure by which they try to monitor my myeloma), are still relatively low at just over 4.

It’s not quite as simple as being in remission though. To keep me there, I have been on a drug called Revlimid (Lenalidomide) as a maintenance therapy. After the initial period being on this, and being ill most months, they managed to get my dose to one that doesn’t lower my white blood count too much and so I take this drug for 2 weeks in 4. I honestly believe that my access to this drug, keeps me in remission. images-80I’m really lucky too that I got it on my trial as it isn’t yet available as a standard maintenance treatment as it is too expensive….£500 per day I believe! However, I’ve been in remission for nearly 5 years now, so it’s definitely done the job for me.

With my recent foot breaks, I’ve now made the decision to come off my bisphosphonate, zometa. Zometa is used to help strengthen the bone but in reality what I think it does is keep building bone, but the breaking down part of the bone cycle is stopped. This is ok perhaps with older patients, but for people like me who have been on it for 7 years now, my fear is that it has made my bones a little more brittle than normal. Please note though that this is NOT a medical diagnosis….just my thoughts on the matter! It would be interesting to know how many myeloma patients out there have issues with breaks in their extremities….and how many of them are on either zometa or revlimid as I’d love to know whether the drugs have caused the breaks that I’ve suffered in the last 2 years.

Other than that, I take aspirin, and I have to take drugs for bile malabsorption. For those of you who suffer with emergency toilet needs, it is definitely worth getting checked for this latter condition, as I have to say, the drugs I take for that now keep it totally under control….so long as I remember to take them!

It’s a bit of a pharmacy of drugs but all in all, my myeloma is kept well in check and I am able to live a pretty normal life. For all the conspiracy theory on pharmaceutical companies and cancer drugs, I am very grateful for the ones that I have :-)

Thanks to all the men and women who have made our country safe!

Veterans Day is a day to remember the brave people who have defended our country in some way or another. My brother is a veteran. And my other brother died in Vietnam . I protested that war in the early 70’s and still feel it was a terrible waste of human life. But that doesn’t take away from that all who have served deserve respect and honor. They have earned it.

its quite cold here, but at least sunny. I walked this morning it was probably 30! I’m kinda thinking of breaking the JKWP and only go when I feel like it. I never seem to get ahead with feeling like I can do anymore than a mile and lately I just don’t have it in me it seems. Since I havent broken it by a day yet, I suppose that’ll be monumental. Plus now with this new development of the rib pain ,who knows what’s going on. I see my doctor in 2 weeks and get zometa. Maybe I should have had the zometa sooner?? It’s a bit of a guessing game I suppose.

Yesterday I did some town chores and made pulled pork on the crockpot. I added blackberry sauce at the end which is really good. Our local bbq place did that and we loved it. Today is just a home day,vacuuming, tidying and I’m going to pull out the christmas wrap . We got another load of gravel for the driveway too. So after this its a NO SPEND everything. Except food and basics.

Tomorrow I’m going to whole foods for a turkey breast and world Market to look for some little gifts for my sister.(she loved the mushroom measuring spoons,I got there!)

Well, I’m trying not to be depressed but sometimes it’s just hard to keep it together…. My typical MO is to just hide. Read or just sit and think, or not think as it may be. Oh, well…