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.