Update - Thursday 2 December

Mum went to the Hematology clinic today with Daniel and Mary. Mum got excellent news and here is a a brief summary:

- The PET scan showed no melanoma

- The breast tissue being investigated has the all clear

- The lymph gland being investigated has the all clear

- They have scaled back their initial diagnosis of which bones exhibit symptoms of Myeloma to the one vertebrae that was removed in Mum's recent surgery. This means Mum has not other instances of Myeloma in her body at the moment.

All of this was the best possible news Mum could have got. Not only does she not have Melanoma, but the Myeloma is far less progressed than initially thought. This is something to celebrate.

Mum starts her chemo soon which will be used to manage the disease (keep it at bay). This chemo treatment is home administered. The drugs are pretty hard core, with one of them not being able to be touched before it is swallowed but the side effects are expected to be minimal (fingers crossed). Mum will be taking thalidomide as well.

It was most definitely a good day.

Quick update (Thursday 25 Nov)

Mum had the PET scan on Thursday. It was a little painful for her having to lay stationary on her back for such a long period of time but at least it is over and this will provide a lot of information on locations of any cancers so the treatment plan can be finalised (or a lot closer).

Mum is hoping to get the results on Thursday at her next Hematology appointment.

Another consultation, another step forward

Mum met with the Hemotalogists again. The theme of this consultation was getting a little more information on the matters that we discussed at the last consultation. We met with Dr Wright who is a registrar. This means he is higher in the chain than a resident and has selected his speciality (apparently residents do a bit of everything until they choose). We were also joined by Dr. Mollee later in the appointment who is a consultant (or qualified specialist). He was excellent in the information he provided us.

So we talked through the tests that were coming up and the things that need to be finalised before the decision is made on the treatment plan. Things discussed were:

- The lung nodule is not expected to be cancer, but just a complication from the surgery that will not cause any issues. It will be monitored but nothing is expected of it.

- Mum has an slight enlargement of the lymphnode in her neck. It was at the upper end of normal size when it came through in the scan. It is likely just that it was fighting some form of infection at the time of the scan and they will biopsy it to be safe. This test will be scheduled after the PET scan that is being planned.

- Mum is going in for an untrasound to look at the breast tissue on Monday 22 November 2010. Again, this is expected to be nothing and no one is worried about this but better safe than sorry.

- Mum is scheduled for a PET scan on 25 November 2010 which will identify areas of cancer with more precision than previous scans. This has to be performed at the Royal Brisbane Hospital as the PA does not have a PET scanner. In this scan a radioactive tracer is injected into Mum's body that is attracted to metabolically active areas, including the brain, heart, kidneys and areas of cancer. This has to be performed before the lymph gland biopsy the tracer would be attracted to the puncture point of the biopsy so would result in a positive result for her lymph gland whether is was cancerous or not.

- The results of the PET scan will assist in identifying areas of cancer in Mum's body to help rule out melanoma (which would influence cancer treatments).

- Mum has been scheduled in for a dental appointment which is required before her bone hardening treatment (Zometa) as when you are on this drug, any tooth extraction is a high risk procedure so they check your teeth before they start the treatment. This is scheduled for 3 December 2010.

- Mum's protein levels have not changed since she first went into hospital which suggests the disease has not progressed measurably (which is good).

- A heart ultrasound is scheduled for 14 December (to make sure Mum's heart is healthy enough for one of the proposed treatments).

So pending the outcome of the above tests, the treatment options are:

- Zometa (this will be administered in any case as a bone hardening treatment to counter the bone destruction experienced with multiple myeloma)

- Thalidomide will be included in the plan as an anti-cancer treatment

- The main decision is whether to go with low dose chemo or the more invasive stem cell transplant. The transplant involves killing all bone marrow (healthy and cancerous) and reintroducing bone marrow through stem cells. The benefits are longer term control of the cancer than the low dose chemo (which would be administered regularly). The downsides are the 2 months after the chemo where recovery from the treatment includes all of the normal chemotherapy side effects, including infections due to a depleted immune system. The first 10 days are hard, and the remainder of the 2 months are better as the patient gradually improves.

- Mum's response to either primary treatment options will not be known until they are tried so a decision will have to be made soon which will be based on a combination of what Mum's body can handle (based on the results of the tests above) and also what Mum actually wants to do.

One thing we did find out which was quite a shock is that without treatment, myeloma patients have a 6 - 9 month life expectancy. When I found this out I was quite shocked and challenged the doctors as to why the treatment plan was taking so long and why all of the tests were not scheduled. They took this concern on board and to their credit had all of the tests booked within a week. We are on track now and at the next consultation on 2 December I am expecting that a treatment plan will be decided on (or close to being able to at least).

The main event - consult with the Hematological specialist

After getting the diagnosis last week, the next step was meeting with the medical discipline who would be responsible for Mum's treatment and care. She had started in general medicine, moved to hemo, then to oncology and now back to hemo (via surgical). It is good to have some certainty in this whirlwind.

This consult was with a doctor we had met before so there was some comfort in that. We did get a lot of information from and I am going to dot point it here:

Diagnosis

- The diagnosis is confirmed as Myeloma (refer this post for a great book which discusses the disease and treatment which will explain some items following in this post in more details). The disease is actually referred to as multiple myeloma as it shows up in multiple bones at once (in the marrow).

- The disease inhibits the function of the body's immune system over time as it replaces more of the bone marrow and also destroys areas of the bone (a by product of the cancer in the marrow does this).

- From her recent skeletal scans, Mum has known legions on her back (which has now been removed), skull, sternum, 10th rib, right clavical, and neck. None of those (obviously excluding the L2 spinal bone which has been removed) pose an imminent risk of breaking.

Mum's scans have also shown up nodules of some kind on her lungs and in her breast tissue. Each of these will be investigated for risk of melanoma (standard step in cases of past melanoma patients. They are very unlikely to be related to the myeloma but also are not automatically assumed to be malignant).

- The breast tissue will be investigated further with an ultrasound (less invasive than a mammogram which would be to difficult in Mum's current surgical recovery stage).

- The lung legion will likely be watched to see how it reacts to the chemotherapy. It is in a challenging position in the body and is also a little to small (1.3cm x 0.9cm) so biopsy is not likely (although this is going to be considered further - more about this later in the post). Mum will get a scan in 3 months to view its progress.

Treatment

- The treatment plan is all about managing the disease as there is no cure for Myeloma. So the aim to to slow the progress of the disease and mange the symptoms.

- Mum will be put on chemotherapy. The chemo for her situation will be tablet based and the side effects are on the milder side. She may not actually experience side effects, but if she did, they would be nausea, hair loss, lower blood count (red blood cell production, white blood cell production, platelet production).

- The chemo would be administered every 3 weeks in hospital (the doctor did mention something about administration at home as well but I think we misheard as I cannot see that these drugs would be self administered or let out of the hospital).

- A course of thalidomide would also be prescribed (so no more kids for Mum). Thalidomide has anti-cancer properties so, along with chemo, can help manage the disease. Its side effects are numbing of the hands and feet and sleepiness.

- Mum is also going to be put on zometa which is a drug administered by drip that will strengthen bones. This will counteract the bone destructive properties of the myeloma. Before this can be administered, Mum's teeth have to be checked out as unhealthy teeth can result in complications of the jaw with this drug. Any bad teeth need to be extracted before the drug is used. Also, good heart function is necessary so she will be getting a heart ultrasound before this treatment can be started.

- When the disease is under control, stem cell therapy will be considered. In this treatment, high dose chemo is administered to destroy bone marrow and healthy stem cells are transplanted to replace the diseased marrow. This will help prolong life and improve quality of life.

The status or stage of Mum's disease will be measured through the quantity of a specific protein in her blood. This protein is an output of the cancer and its concentration is a measure of the extent of the disease. Mum has taken a blood test and we will be getting an update on the concentration of this protein this at her next appointment.

Something to note at this point is Mum's Myeloma is a little non-standard in that it does not display the same concentration of symptoms in respect of this protein (and another that is measured in urine). This is not necessarily abnormal but it added to the initial confusion in diagnosis. Although Mum does not have the same level of concentration of these proteins, it is still an effective measure of the stage of Mum's disease (and also the effectiveness of treatment).

What's next?

There is now a lot of data on Mum in her file from all of the tests that have been performed on her. This is a great situation to be in as it will allow treatment to be focused and appropriate. Her case is being presented to a fortnightly meeting of doctors to conclude on her treatment plan (including the plan to diagnose the lung nodule). At the moment, the treatment plan above is the proposed plan. I had more questions but we are holding off until the treatment plan is finalised.

We will be going back in 2 weeks time (11 November which Mum is going to send me a calendar invite to - hint) to discuss the outcome of the Dr panel meeting. The questions I have at this time are:

- How long is the chemo treatment (every 3 weeks for how many doses)?

- Will Mum need any supervision / support straight after each treatment and if so, for how long?

- What can we expect in terms of progression of the disease and how it will impact her lifestyle and what do we need to plan for?

- When will a decision be made on stem cell therapy?

Please add your questions to this post. This is our only chance to ask questions before we decide agree to the treatment course so we need to get this right.

This has been quite a lot of information so I will just add a summary:

- Myeloma is confirmed

- Melanoma is being ruled out through an ultrasound of the breast and watching the lung nodule

- Mum is getting a dental check up and heart ultrasound to prepare for the zometa

- Treatment plan will be finalised in 2 weeks and communicated to us on 11 November.

And the good news is the current progress of the disease means that when Mum recovers from the spinal surgery, she will be reasonably fit and capable which is great news. Also, she is reporting more and more good days after the surgery so is making great steps in her recovery.

Thanks again for all of the support each of you have been extending to Mum. She loves the comments, phone calls and especially the visits (so please don't be a stranger). She is also really thankful for the quality of the medical professionals she has been seeing, especially her GP Stuart.

Back to hematology

Mum has an appointment late Thursday afternoon at the hematology clinic. We are assuming they will explain the disease and treatment options. We will hopefully then have some info that will make everything much clearer on what Mum can expect from the disease and treatment.

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Diagnosis in

Mum and I attended a consult with her oncologist today, Dr Foote. We thought it was going to be routine but the doctor started by telling us a diagnosis was in. It was Myeloma as was initially thought. Apparently Mum must have a non-secreting version that does not exhibit all of the normal signs so that is why the diagnosis was not clear before the biopsy. To remind yourself of the particulars of this disease, have a read of this link.

This was really good news. Apart from having a diagnosis so we can move forward, it was the diagnosis we were ultimately hoping for. Melanoma was largely untreatable and it was the front runner so to be diagnosed with the more treatable Myeloma was a really good thing. Apparently for this cancer there are far more effective drugs available. This will be in the form of chemotherapy.

Mum also has a small nodule on the lungs that is going to be monitored. It is in an awkward spot in the middle of the lung so a biopsy would be risky and also not recommended so soon after her back surgery. Therefore the size if it will be monitored through the chemo treatment and dealt with if it grows or is still suspicious down the track. It not necessarily something bad.

Mum is now being referred back to the Hematology department which is the speciality that Myeloma falls under (as it is a cancer of the blood). Dr Foote is organising this referral and Hematology will be in touch. He also said that if for some reason Hematology cannot start chemo straight away, he would recommend radiotherapy in the meantime. If chemo starts quickly, radiotherapy would not be necessary.

Other information from the consult:

Mum asked about her pain levels and if they were normal. The doctor reassured her that pain and discomfort are normal and expected after surgery this big. This was good for Mum to hear as it let her know that her pain is not a sign of something wrong, just expected during her recovery. This will make it easier to just accept the bad days knowing it is going to get better.

Also, Mum asked if she should be worried about her swollen legs but again, he said it was normal. There is a level of blood loss during the surgery that results in blood getting into other areas of the body that will dissipate over time. Again, this made Mum feel better.

So, where to from here? Consult with hematology, likely chemotherapy and keeping an eye on the lung nodule. Also, Mum will be getting a post-operative surgical consult to check on her progress. This will be when her surgeon returns from being on leave.

All in all, a good day for Mum.

Straight from the horse's mouth

Here is an update on Mum written by Mum:

As Ian said I arrived home Thursday afternoon and so happy to be here. Apart from being able to have a ciggie without doing a marathon, I really like being in my space. Ian played pharmacist and made sure I was settled before going home. I am so lucky to have such a thoughtful, caring loving son where nothing is too much trouble where I am concerned. I also have to thank his employers for their understanding and the amount of time they have allowed Ian to have off.

I have the best kids, family, friends and neighbours that anyone could ask for. Chris helped Ian bring in my stuff from the car, Sandra came to see if she could do anything, Neil came over to say Hi and saw the wheely walker so said he would put a ramp down to the car park so I could go for my little walks, and I knew I was in the best place to aid my recovery.

Friday came and I was chatting with niece Deb and I told her that my mattress was too hard and I woke in quite a bit of pain and within nano seconds of me hanging up from her Ian was on the phone wanting to know what we had to do to fix the problem. As it happens I bought an “egg box mattress overlay” which Sandra went and picked up (problem solved), Sandra ran another errand for me, swept the floors and stayed when Gerri arrived with lunch so all in all a lovely day. Lauren popped in Friday night cause when she rang me I was struggling with a little problem and it brought me to tears (silly me) which of course is exactly when the phone rang – best cuddles in the world thanks Lauren J.

Saturday saw Daniel and Mary arrive which is a highlight of my day and Daniel adjusted my wheely walker brake so I could stop giving myself blood blisters lol. We watched some horse racing, sorted out the ills of the world, checked out meals for me to keep in the freezer and generally had a lovely time. After they left Ness arrived and then we really did fix the ills of the world, talked about gravity, (it works by the way roflmao) and generally laughed our heads off. The best medicine of all in my book. Ian popped in with some forms (bloody hell the forests hate us) for the Dr to complete tomorrow. Still the quicker it is all completed the quicker everyone will be happy. Ness made sure I didn’t need anything before she left and it was almost time for dinner so all in all another wonderful day.

And today Maria and Lochlainn called in, again with lunch, which was another nice surprise. I am just a little social butterfly I know. Everyone loved the unit and what Win has done with it and all thought it was bigger than the upstairs one which of course it isn’t. I am so much happier in this one which surprises me as I did love my home upstairs.

I am going to ask the Dr if I should still be in the pain I am in or if I am just being my impatient self. As Ian said, Dr Foote thought he may have a diagnosis for us but if he doesn’t we are ready for that too. My GP has explained to me the many and varied diagnostic tests which may or may not have to be done and also that these can sometimes take weeks. I guess we have all got used to an instant world and waiting is foreign to us.

Thanks to Lauren’s granddad for fixing up my tobacco pouch which was my late Mother-in-Laws’s money purse and is very special to me.

GRAVITY WORKS!!!!!