Post Xmas Update – Happy New Year

Sorry it’s been a while – things have been pretty hectic. We had a lovely Xmas and also celebrated my 60th at the end of November with an afternoon party/drop in which was lovely. My next target is 65!!

Progress on Velcade has been mixed. My levels were coming down nicely and had reached something like 220s on my light chains from over 1000. But round four results showed a slightly higher result. There is often a plateau reached and I am on a lower dose than ideal because of the peripheral neuropathy. I am in my 6th round atm and will get my fifth round results in about 10 days so we shall see.

We are comtemplating a mini allo (donor) transplant. This means that not all my immune system is completely blitzed as in a full transplant. The nearest centre is Leicester, about an hour away. They have an excellent reputation, but the logistics would be harder than using our local hospital and ALL treatment for at least a year would be in Leicester as they don’t trust a normal hospital to pick up eg graft problems straight away or to treat the inevitable infections properly. This gives them a good risk of death rate for the procedure of around 10% which can be much higher elsewhere and is not too much higher than the risks with auto transplants (own cells).

We spoke to the lovely but very forthright main consultant at length and she made all the issues plain, especially the graft versus host issues that can be very severe and turn into chronic issues etc. But she is obliged to paint worst case scenarios. The thought is pretty daunting, but I am young enough to do this and I am quite resistant to the drug regimes, so now is the time. I could hold on and try the new drugs but this may give me some remission at a time when I am strong enough to do it.

We have made no decision yet – I have had blood tests sent off and I think they have started the process of looking for a donor as my brothers are not matches. We are meeting again in early Jan to see where we are. If I decide to go ahead the actual transplant will not take place until at least April.

So looking at my current treatment I really need to get my levels down further. I had an entertaining bone marrow biopsy just before Xmas so we could assess whether I needed more rounds of Velcade. As last time, it was impossible to get fluid out. The nursing assistant was on her first day on haem and had to go out as she felt faint, so I just braced against the wall instead of her. We tried two entry points and eventually got a nice core, but I managed to bend the needle!! I am quite lucky as although it is a bit painful I don’t find it too bad and don’t need gas and air which they now offer – makes me very queasy anyway. But my hip was pretty tender for a day or so.

I am also getting my tooth extracted soon despite the ONJ (jaw disease) risks, but it’s being done at the hospital with antibiotics before and after. I have been off Zometa (bone hardening meds which can contribute to ONJ) for 6 months so am crossing my fingers I will be OK.

So all go. It is a bit unsettling and Bob and I are having to think of the practicalities as he works full time and will have to take leave somehow if I go ahead, which has financial implications etc. He will be ferrying me too and fro for a year, although I could use one of the voluntary services to supplement that.

The consultant said it will be the hardest work we have ever done. But I think we can go for it. I will update on the situation after we have next spoken to her and maybe will go through some of the ins and outs for the benefit of other myeloma patients. We recorded what she said last time, so I can list some of the issues.

In the meantime, here’s hoping all readers whether myeloma patients, carers or friends, have had a lovely Xmas and that 2014 is a a positive year for you all.





18 month post-transplant review

IMG_2306Today is 18 months to the day after my allogeneic transplant. It’s my 18-month-iversary!

I’m alive, pretty well for the most part, looking and feeling good. So today is worthy of a celebration, although it is more of a quiet nod of acknowledgment than a champagne party.

Here’s a review of my current health status:

  • The myeloma is in remission. Hurray!
  • I still have 100% chimerism. Hurray!
  • All blood counts are within normal range (apart from slightly raised eosinophils, which can be indicative of Graft versus Host Disease, so no-one is concerned about them)
  • Graft versus Host Disease [GvHD] continues to make my mouth dry, tight and sensitive. No treatment has worked, I still cannot cope with spicy or hot foods/drinks. Either it has slightly improved or I have adapted to it. It doesn’t bother me as much as it did previously.
  • GvHD, in combination with being post-menopausal, also continues to make my vagina dry, tight and sensitive. I get some benefit from using Vagifem oestrogen pessaries, but mostly I just live with it.
  • I had two smear tests. The first attempt was very painful, I bled and they didn’t manage to collect sufficient cells, so it had to be redone three months later. That was slightly less painful, with no bleeding and a successful collection. The result was clear. Hurray!
  • I have had a successful mammogram. All clear. Hurray!
  • For over six months, I have been experiencing tightness and loss of flexibility in my muscles, most noticeable in my legs and arms, but also affecting fingers and other muscles. It has been investigated, with no clear outcome. My consultant is now willing to consider that GvHD may be the cause (which is what I had said all along). I will write about this in more detail in another post.
  • I am seeing a Physiotherapist to help with the muscle problem but I’m not impressed so far. He has never come across these particular symptoms before, so he has given me a sheet of generic exercises to do daily, but I’ve only done them once. I don’t believe they will make any difference.
  • A recent MRI scan showed some deterioration of my T12, L1, L2 and L3 spinal vertebrae, most of which was evident in the skeletal survey carried out on diagnosis in 2011. A bone density scan was recommended however to check for osteoporosis. I’ve had the scan, but not seen the results yet.
  • I have completed the full course of Zometa (bone strengthener). Over two years, I’ve had eight four-weekly infusions, then eight eight-weekly infusions. After that, the risk of osteonecrosis of the jaw [ONJ] is deemed too high to continue taking the bisphosphonate medication.
  • Slightly more worryingly, my lung function has decreased over the past months, since the transplant. A CT scan has been requested to see if there is any lung damage caused by GvHD. The loss of lung function could just be residual effects from a recent cold virus. If it is GvHD, there is no treatment. It usually remains at the decreased level, but is unlikely to get worse.
  • As well as muscle tightness, I have recently been experiencing aching knee and elbow joints, particularly at night and on waking. This is very new and I haven’t mentioned it to a consultant yet.
  • I experience fatigue on a daily basis, usually feeling sleepy around 4-6pm, finding it difficult to do much in the evening, often sleeping for up to ten hours a night and finding it hard to get out of bed in the morning. It doesn’t really stop me from doing things I want to do, but perhaps it should…?
  • your brain after chemoOn top of the fatigue is chemo brain: short-term memory loss, inability to retrieve words, almost impossible to multi-task, short attention span, difficulty concentrating and reading, etc. I’m reading (or trying to read) a book to help me manage it. More on this subject in another post.
  • I am still taking anti-depressants. I weaned off them in the summer, but began experiencing anxiety again, so after discussion with my GP, I recommenced taking them. I now feel emotionally stable and will continue taking them for a while yet.
  • After all the excitement over sleep apnoea/UARS mentioned in previous posts, I don’t use the CPAP machine absolutely every night, as it still annoys/upsets me. However I do use it if I’m sharing a room, out of courtesy.
  • At an optician’s appointment, I found out that my eyes watering, which I thought was due to tiredness and fatigue, is actually a condition called dry eye. It is caused by Meibomian Gland Dysfunction. It is a common problem with age, although it can also be a side effect of taking Fluoxetine. Treatment is with an Eyebag and lubricant eye drops. I will write about the dry eye story in more detail in another post.
  • Weird side effect of who-knows-which-bit-of-treatment is that my nose always runs whenever I eat, hot and cold food alike. I don’t have a cold or an allergy… just a runny nose!
  • IMG_2623Daily, the prescribed drugs I take are Penicillin, Aciclovir and Fluoxetine. I add Menopace, a menopause vitamin supplement and have just started taking Omega-7 to help with the dry eye. According to the blurb, it may also help the mucous membranes of my mouth and vagina. I’ll let you know how I get on. In the meantime, I love how the added orangey-red capsules make my tablet boxes a lot more colourful.

And a quick review of my current activities:

  • Tai Chi classes continue twice a week and I now assist the teacher with a new beginners’ class
  • Volunteering for Citizens’ Eye Derby continues
  • Following a Mindfulness course at the Nottingham Maggie’s Centre, a few of us continue meeting weekly or fortnightly to support our mindfulness practice
  • I have started swimming once a week with a friend, usually doing a minimum of 30 lengths (half a mile)
  • I recently participated in a Playback Theatre UK annual gathering and am looking forward to further training and workshops
  • IMG_2614Having relearned to knit, I have begun a new project to make handwarmers – photos will follow when completed
  • I proudly write a four-weekly column for the Nottingham Post newspaper and am looking for other writing opportunities to earn an income.
  • I have my fingers in a few exciting, creative project pies, which are in various stages of coming into being. Life is exciting!
  • I am not blogging much, which I miss, but somehow don’t find time, energy or head space to write, even though I have lots to share.

So, there we are then. Not the most riveting of posts, but I wanted to mark the day with an update, as much a record for myself as anything. I need to publish it now as it’s way past midnight and my anniversary is over. Roll on two years! Then I might have a more lively celebration.

In the meantime, I hope I can blog a bit more frequently. Any hints or tips on how to keep up with blogging regularly will be warmly welcomed.

January 2013

January 2013 marks eight months post-transplant, so time for an update…

I’m well and truly over the virus I had over New Year… and the accompanying anxiety.

My blood counts remain good. I don’t even look at the results now.

The result of the most recent serum-free light-chain test (the test for my type of myeloma) had not yet come back at my last clinic visit, probably due to the winter holidays, but I’ve not heard anything since, so it’s probably the same as the last one, in which the myeloma was undetectable.

They will continue to test every two months, so any relapse will be spotted in good time. I’m aware that many of my fellow myeloma buddies who are in remission get very anxious each time they have a blood test or clinic appointment. Fortunately, so far, I don’t experience any anxiety, but that may change in the future, when clinic visits are further apart and therefore become more of a ‘special event’.

The last chimerism test showed 100%, i.e. the donor cells have completely taken over my immune system. Chimerism can fluctuate, so they continue to test every 3 months for two years. They did a chimerism test at my last clinic visit, from which I’ve also not had any results, but I’m not at all concerned about it. Even though I know it can be otherwise, I expect it to stay at 100%. To be honest, I don’t even think about it.

A leukaemia patient I see in clinic, who is six months post-transplant, told me she hasn’t achieved 100% chimerism, so she will be having a “top-up”. This is the colloquial term for a Donor Lymphocyte Infusion [DLI], where they give an infusion of lymphocytes (white blood cells) from the same stem cell donor, without the need for chemotherapy and therefore a LOT less risky than a further full stem cell transplant. However a DLI can often cause more of a Graft versus Host reaction [GvHD].

Another leukaemia friend from clinic has not had any GvHD from her transplant eleven months ago, so she too may be facing a DLI in order to achieve not only a Graft versus Host response, but more importantly, a Graft versus Leukaemia response. In her case, they will need to ask the donor to donate again as they have already used his initial ‘donation’. She’s so greedy!

For more information about DLI, I found a very informative leaflet published by Leukaemia and Lymphoma Research. I was tickled to see that it features on its cover, a photo of Prof Nigel Russell and Emma (stem cell nurse specialist) from Nottingham City Hospital.

Fortunately, with 100% chimerism and some mild GvHD, I don’t need a DLI at this point, but it may be required if I relapse.

I am also still receiving infusions of Zometa (Zoledronate) to protect my bones. Initially, I had it every four weeks, but after eight months, they only give it every eight weeks. I will have a total of 16 infusions over approximately two years. After that point, there is an increased risk of osteonecrosis of the jaw [ONJ], so they stop.

Another issue is, as Wiki says: “Zoledronate is rapidly processed via the kidneys; consequently its administration is not recommended for patients with reduced renal function or kidney disease.“ Fortunately, my kidneys have improved since I was first diagnosed, no longer a subject of concern. It’s a testament to their relatively good health that I can actually receive Zometa. I couldn’t even start receiving it until September last year because they were in such poor shape.

Zometa bruiseI had Zometa infusion number eleven last week. Fortunately, it only takes fifteen minutes, plus a flush before and after, so I wasn’t in Daycase for long. Annoyingly, I had that same irritating nurse, who although she cannulated me on her first attempt, managed to create a big blue tender bruise on my hand. Owwwww!

Tuesday's pillsMy days of taking huge quantities of tablets are over for now. In the early days, I needed a chart to keep track of what to take when, at another point I had to buy an additional pill box just to contain them all. Now, it’s quite simple… just seven tablets a day – Aciclovir, Penicillin and Fluoxetine (Prozac).

The major thing that is not okay is my mouth – I still have oral Graft versus Host Disease. I mentioned previously the various treatments we have tried to reduce the soreness in my mouth. None have had any impact at all. My mouth and lips still feel tight, sore, dry and very sensitive, especially to sharp tastes like pepper, chilli, vinegar, hot drinks/foods, crusty bread or crisps. And some everyday activities make me wince… flossing my teeth, yawning or when I accidentally jab myself with a fork when eating. From time to time I get blisters – on my tongue, inside my lips or cheek. Neither the sensitivity nor the blisters stop me from eating (heaven forbid!), but they do affect my food choices and are an ongoing discomfort. It might improve… or get worse… or stay exactly the same. Nothing I can do about it!

The worst of it is when I brush my teeth with a regular mint toothpaste. I do occasionally use a fennel one from the health shop, but while I like the taste and it doesn’t hurt my mouth, I don’t quite trust its efficacy for maintaining my teeth, which need all the help they can get. However, I will be seeing my dentist for a check-up tomorrow, so I will ask her advice.

I probably need to mention, for the sake of complete honesty, that I am still having treatment for the genital warts. Without ongoing attention, they flare up again, despite the antiviral tablets. They aren’t really a problem, it’s just that I’d rather not have them, of course. I went to the GUM clinic again last week. I’m not wincing from the cryogun freezing as much now. And I don’t think any further details are required.

There are some more minor issues, which include fatigue and low-level depression – yes, despite the antidepressants, which I am doing my best to accept (more on this later); difficulty getting to sleep and waking during the night, which may be part of the fatigue; a slight skin rash and blackheads on either side of my cheekbones, which I generally ignore for the most part and am hoping will disappear at some point.

So, today is exactly eight months and one week post-transplant. It’s looking pretty good overall, but it is still early days. N.B. ‘Early days’ continues for the first two years.


Wow how time flies when you are racing down the highway of life, motherhood, and  multiple myeloma!  
Life seemed to be cruising along quite well as I enjoyed the end of chemo treatment for now, and the beginning of school.  To be honest it was really nice to send the kids back to school and have a little more peace and quiet at home to rest and recover from treatments.

        Summer turned into fall as our family became consumed with sixth grade, ninth grade, and football, football, football.  It has been good to get back into a routine, although I still struggle with the getting even the basics(cleaning, cooking, laundry) done around the house some days.  I am told it will take a good six months or more to regain my energy and get the chemo out of my system.

       This fall my husband coached my youngest son’s little league football team.  They had a great time and took things pretty seriously; winning most of their games.
       My fifteen yr. old son played on the high school freshman team.  He played with heart and struggled with his size; as he is on the smaller side of most of his his team mates.

       My 18 yr. old son finally got a job after searching half the summer.  He is working for a freeway construction company.  He drives to construction sites throughout the county collecting rock samples.  He loads the samples in his brand new work truck (yea I’m somewhat jealous!) and takes them back to a lab for testing. For the last ten weeks he has been working the graveyard shift.  This has been a major change for my extremely social son who basically eats, sleeps and then works 12-14 hr. a day,

       My previous post gave you a glimpse of the highlights of becoming a new grandmother.  It has been an amazing experience, and I am very lucky to live within a couple miles of this gorgeous growing baby and her parents.
      So that has been a recap of life on my highway over the last few weeks. There have been many good things happening along the way, but I have definitely ran into a few speed bumps as far as my health goes.  
     I am learning that remission does not mean the end of “cancer concerns,” or lingering side effects.  My body, mind, and soul have been through so much over the last two years and I have been somewhat naive in thinking that I would be able to bounce back more quickly.
     Speed bump number one slowed me down right after all my major tests in August.  My blood work all came back with good numbers but a PET scan revealed  some over activity in the uterus—huh!  My oncologist suggested I had an additional MRI on the pelvic region.  He did not seem too concerned,  I on the other hand “freaked!”  
    I celebrated my 46th birthday in the tunnel with some anxiety for another few days, but luckily the results showed nothing, nada, zip!  I have got to learn to not let these things get to me so intensely.  Who knows what would show up inside any of us if we were tested, scanned, and x-rayed too frequently with high powered, sensitive equipment. A case of indigestion could show up as your long lost twin or a nasty tumor if we rely and dwell on all this technology too much and too often.  Does that make sense?
     Several weeks later I ran into speed bump number two. Called ONJ.  And what may you ask is that?  Well I asked the same question as I  began a monthly bone hardening infusion way back in December of 2008. A common part of MM treatment involves using a Bisphosphonate called Aredia or a Zometa to treat, fill in, or strengthen the bones which have been damaged by the cancer cells in the bone marrow.   ONJ stands for Osteonecrosis of the jaw.  I had read about this and questioned the oncologist about this side effect from Aredia.  He explained that it was very rare and I should not have to worry about it.  Well nearly two years later I’m worried about it!  
    I went to the Dentist about a month ago because I had a sore on my gum at the very back of my mouth that would not heal.  He took x-rays-couldn’t see anything and referred me to a peridontist.  By my appt., a small piece of bone had broke through the gums and I was diagnosed with ONJ.  My elementary level of understanding of this means that the delicate balance of bone being built and then reabsorbed within the body is disturbed when long term use of bisphonsphonates are introduced.  The bone growth in my jaw is a result of that. The dangerous part of this is when infection enters the scene.  The bones of the jaw can become so infected that they die.  This can be very painful and disfiguring.  It is recommended that no heavy dental work or extractions be done for quite some time after taking Aredia.  The good thing for me is that I have had very little pain.  The bad thing is that I have a major cavity on my top back molar.  The easy thing to do would be to just pull that baby out, however that is not possible right now so-lucky me- I went in to an endodontist to have a root canal on wednesday.
     I hope I am not whinning too much or boring you with all the details, however I am letting you know that now might be a good time for a “commercial break.”mmm………….
     Okay back to my story.  So things were going quite well.  I had prepped myself well. Brushed my teeth extra long, flossed twice, gargled mouthwash, and even watched a youtube video of the procedure.  I was ready when I sat in the chair and the Dr. seemed very kind and gentle as he explained what he was doing. 
      The time seemed to be going down fast when all of a sudden I felt like I was drowning.  My throat was stinging and with my my mouth propped wide open and stuffed with a rubber dam covering all of the teeth in my mouth, I motioned that I had to sit up RIGHT Now!!  The nurse quickly removed everything out of my mouth and I started bleeding out of my nose and coughing up blood.  This went on for a good twenty minutes.  They kept shooting  syringes of saline up the drilled out root canals into my sinus’ to get the blood flow to stop.  This made me cough more and continue to bleed out of my nose.  Pretty graphic Huh?  It was disgusting.  The Dentist said he had only had this happen once before with a patient and he really did not have a reason why.  We looked at the x-rays and the root canals had come close but not entered the sinus.  So there was really not a clear explanation.  But you should have seen my face.  I was swollen up on one side like a big red balloon.  They nurse had injected about 2 cups of saline into the right sinus.  After several minutes of more coughing and ice packs the Dentist asked if I wanted to finish up the procedure that day.  Aaaa..Yes please!! I was not planning on coming back!  So ten minutes later, extra strength tylenol, ice packs in hand, $900 down, and I was out the door.  
     Once again I became the patient battling a rare cancer, a younger woman with an older man’s disease, and the person with another rare side effect. The questions of “why me” have long faded away.  Now my questions seem to be about understanding my health, my body, and multiple myeloma.  It is a huge stretch for my chemically, chemo-treated mind. 

     Most of the time it is better to concentrate on all the good things, people, and blessings in my life.  I may not be driving a shiny red sports car down my highway of life.  My dusty, dented up body, or my “uniqueness”  or “rareness”   sometimes wears on me when I have to slow down over all these speed bumps,  but it also provides me with some cynical humor,  crazy adventures, and beautiful scenery along the way. 

(And p.s. next blog I promise to talk about my new puppy instead of root canals.)