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!!!!!

Home safe and sound

Mum is now home and very happy for it. We unpacked and set up her medications and now Mum is wading through the volumes of emails etc and catching up. We picked up a walker so she is safely mobile in the house (and if she goes out). Aunty Nor organised the walker and it is perfect. It provided her the necessary support but is small enough to allow her to get around her unit.

In terms of Mum's biopsy results, we have been advised that they may not be in by Monday's clinic appointment. We have therefore removed all expectation on when it will be in and we will just wait for the call. Until then, the focus is on Mum's recovery from her spinal surgery. No use in wasting a worry.

Home time

Mum is being discharged tomorrow. She is able to walk unassisted small distances. She is getting a walker to assist when she needs to walk greater distances. This will aid her during the remaining recovery time (which apparently can be months). Thanks for organising Nor.

She has been classed as "Urgent" with Blue Care now which apparently will mean she will be assessed faster. Mum still wants to go home without this support as her neighbours will chip in in the meantime.

She is excited to be able to go home and it is a good sign that her recovery is going well.

EDIT: The PA has organised a daily visit from a physiotherapist to check on Mum's progress and also Blue Care to assist in housework.

Quick update (Tuesday lunch time)

Mum has been transferred out of the high dependency unit of the ward and is now just a regular post operative patient. She has also been told that subject to her being able to walk safely, she can be discharged on the weekend.

What's next

Mum was visited by her surgeon, Dr Laherty, this morning and he commented that she was doing really well. Mum walked even more today and is recovering in leaps and bounds. She was in a bit of pain this evening and did the right thing and asked for more medication.

We are expecting biopsy results from the surgeon around Wednesday (depending on possible delays from the pathology lab). Mum has an appointment with Dr. Foote (her oncologist) on Monday morning to discuss the biopsy results in more detail and also to talk through his treatment plan.

Until then, Mum is enjoying the hospitality of the PA and focused on getting well enough to get discharged.

Sunday update (2 days after the operation)

I visited Mum today and she is doing really well. She feels great and can already feel the relief from the operation (removing the fractured vertebrate). There is obvious discomfort and pain from the incision but this improves each day. Mum is up and walking (slowly) and is focused on getting discharged this week (5 days recovery). From tomorrow they will be asking her to get out of bed for about an hour a day (sitting on a chair) and walking will continue.

She has access to a phone but visitors and calls are limited as she is in a high dependence ward and excessive calls and visitors are considered bad for recovery of her and her fellow inmates. We are not sure yet whether she will be moved to a more standard ward at some point.

Mum again has been complementary of the nursing staff who have been caring for her in the ward and in ICU.

She really appreciates all of the messages she is getting from you all and wanted me to pass on a thank you.

I'm in with Mum in ICU now

She is a little groggy but doing well. She does have back pain (which the Dr told her to expect and to be honest, makes sense). Mum assured me she is pushing the morphine button lots (the PCU).

The ICU nurse let me know Mum had a good night and she is ready to go to the ward. They are waiting on being advised of a time for the transfer.


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A real update

I have just received a call from the hospital and been advised that Mum is out of recovery and the operation went well. It took a little longer than expected and she did experience higher blood loss than anticipated and on this basis, is spending the night in intensive care. I asked if there was anything that we should be worried about and he advised no. Mum was in intensive care as a precaution due to the blood loss during surgery and so they can monitor her overnight.

She is still on a ventilator and very groggy but she will be up for family visitors tomorrow (limited access at the moment).

All in all, it went well.

5pm surgery update

Mum is out of surgery and in surgical recovery. The receptionist advised that it must have gone as planned or I would have been contacted. She was unable to tell me when she will be transferred to the ward and was not able to put my call through to someone who could provide an update on Mum and how the surgery went. She said I would be contacted when she is transferred to the ward but I should call in an hour or hour and a half if I have not been contacted.

That is good news- although being an auditor, I find it hard to rely on assumptions.

3.30 update (still in surgery)

I called the PA again for an update and the receptionist said she was still under the care of the surgical team (so either in surgery or recovery). She recommend calling back at 6pm based on the time Mum went in. That means I am going to call at 5pm. I will update again just after then.

Update on Mum's progress

I called the PA and Mum went into surgery at 12.10pm. She has not exited the surgical unit so is not on the ward. I was asked to call back in an hour (3.45).

Surgery day update

Mum has been taken into the surgery prep ward. She is expected to be called into surgery at about midday. She is then expected to be out of surgery and recovery (so in the ward) around mid afternoon. When I left I asked her not to bleed out. She said she would do her best.

I will call the hospital around 3 to get an update and I will post her status here.

Ps I have lost my car in the hospital car park so I may just have to wait around here anyway.

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The surgery clinic

Today Mum went to the surgical clinic to speak to four specialists: a surgeon, an anaesthetist, a pharmacist and a Nurse. Daniel and I were there for moral support, to ask questions and because we had nothing better to do at the time :)

Each of the four were considering different aspects of the surgery scheduled for tomorrow and were also there for any questions Mum or the family had. Here is a summary of the consultations:

Nurse- The nurse dealt with the administrative aspects of the surgery, including fasting before, what to wear, what not to wear etc. They also addressed how Mum would cope at home after surgery and said Mum will only be discharged when she can mobilise appropriately (can safely live in her apartment). Although Mum will be in substantially better shape than she is now, there will be recovery time where some domestic tasks which may pose a hurdle to Mum (cooking goes without saying but this is not related to her condition). The nurse was surprised that Mum has not been assessed after her first hospitalisation last month. After this consultation, Mum, Daniel and I decided we would talk to the hospital social worker early about domestic assistance and we would make it clear that Mum will not consent to a discharge without being appropriately assessed with the right level of domestic care in place.

The nurse was very caring and another excellent example of the Qld heath system (for all the flaws reported in the media, there a some amazing people working the system keeping it running for the benefit of the patients).

Anaesthetist: The anaesthetist is in charge of keeping mum under anaesthetic while in surgery as well as managing her pain post-op. He advised that the surgery will be close to her lungs which will necessitate a double barrel chest tube (so each lung can be independently fed oxygen and can independently collapsed to allow the surgeons better access to the site of the surgery). Apart from that, he explained that he will knock Mum out before the surgery and keep her out of it the whole time and that is what we wanted to hear from him.

He also walked through Mum's post-op pain management. Mum will be brought out of general anaesthetic heavily medicated so when she wakes up she will be comfortable. After a surgery like this, the two options that have been considered for Mum's case are an epidural and a Patient Controlled Analgesia morphine drip (PCA). The epidural has been ruled out due to the risk of haemorrhaging around the site of the needle. This leaves Mum with a morphine vending machine with a limitless supply of tokens. She will have a button that she can press to administer morphine when she feels pain. It will deny a dose where it exceeds safe levels but Mum has clearly been told to be aggressive with this. At the slightest hint of pain, Mum is to tap that PCA. If she does not, the pain may take over and it can be hard to bring it under control again.

Mum was not the best at calling for pain relief in her first few weeks of the disease so she is going to need to concentrate on this. If you speak to her over the next week or two, please do ask her how her pain is going (please do) as this reminder really helps. Remember, with the pain medication she is on, there is a level of intoxication that impairs her thinking (her pain meds are very, very strong) so these prompts are very beneficial.

He also considered the risks associated with Mum's blood thinning medication. He was satisfied that the risks were manageable but Mum made it clear her eyesight was very important to her and this was to be taken into account in treating her (i.e. get her back on the blood thinning medication ASAP as this significantly lowers the risk of Mum popping a blood vessel in the eye). They are expect to use frozen platelets during the surgery to reverse the effects of the blood thinning medication. They will conduct a blood test tomorrow morning (the day of the surgery) to work out her blood viscosity (INR) to make a decision on how exactly to treat it during the surgery.

At this point it is worth mentioning Mum's GM. His name is Stuart and when Mum was at an appointment with him on Wednesday, after finding out Mum's INR, he called the PA Surgeon right then to advise of Mum's VERY high INR (meaning low blood viscosity and high bleeding risk). Not only was his action great for Mum's piece of mind, but also was Dr Laherty's response. He said they would counteract this effect with frozen platelets and vitamin K. This quick response was very comforting indicating that he knew what he was taking about and also can think on his feet. Mum has been very lucky in the medical professionals she has been dealing with (with her personal GP being no exception).

Pharmacist: This was a straightforward. She looked at all of the medication that Mum is currently on and considered if it was going to impact the surgery or pose a risk. She found that Mum can keep taking her current medications without a problem (with exception of the blood thinning medication which she ceases on Monday night). This is good news as this consultation is usually about 2 weeks before surgery so this could have posed a risk of postponement as it was only the day before surgery (remember, Mum is being rushed through due to the risk of melanoma and therefore the need to remove the bone legion as quickly as possible).

Surgeon (neurologist): This was the money consultation. Although we had received a substantial amount of information at the consultations so far, this one was with the team who were in the drivers seat. He was a confident man with a sense of humour and it really worked well to provide us with confidence and also put us at ease (it was not the inappropriate humour that one would expect if he was a Young- which is a little disappointing).

He reinforced the information provided by the anaesthetist about Mum's blood thinning medication which is good. Neither are concerned about the risks because they are manageable. This was something I was worried about before but I really believe it is not a risk of concern after these consultations.

The operation will take a few hours but in total, Mum will be in pre-op, the operation and post op for about half a day. After this, she will be in recovery. If it does not go as planned, she may be in intensive care but this is a very low risk. So tomorrow Mum checks in at admissions at 10am and they take her to surgical care in prep for the operation. They also take blood to test her INR (blood viscosity) so they have the most up to date information to decide on how to deal with her higher bleeding risks.

So we can expect Mum to be out of surgical care and on the ward in the late afternoon or evening on Friday. From there, the focus will be on pain management (and Mum was advised that the aim is for her to wake up in a state of comfort through effective pain medication, basically a chemically induced Saturday night in the Valley). The next day (Saturday) Mum is expected to be out of bed and walking (although I cannot see this being a problem as Mum will be fighting for a nicotine fix well before this point). She will also have a fluid drain in her side for 24-48 hours.

Overall, the day was long but very comforting. We are under no illusion that this is not a significant surgery but from the consultations, it would seem that all parties have the risks mapped out and planned and Mum is in good hands. We are now at the point of crossing everything to bolster the medical team in any way possible- every bit counts.

We have some action

Mum had her spinal consultation today with Dr Laherty. His recommendation was that Mum have surgery on the fractured vertebrae to remove it and replace it with a combination of a cage (to replace the bone) and a plate to hold it in place. The plate will be screwed into the vertebrae above and below the cage.

The surgery is called a vertebrectomy and the purpose is to:

1. Relieve a significant portion of Mum's pain which is caused by the collapsed vertebrae and restore her spine's function allowing her to regain most of her movement (there will be some loss of flexibility from before the fracture but it will be largely restored).

2. Remove a significant portion of the suspected cancer that is in her bone.

3. Provide a viable sample of tissue to test so her disease can be diagnosed. This will allow treatment to be determined for the cause of the disease that is impacting her bone.

Here is an animation of a similar surgery that I found interesting. It is not a video of a person, it is computer generated images ==> http://www.youtube.com/watch?v=SYwPyoDIEfM

There is a chance the disease has impacted the pointy out bits on the vertebrae (they are called the pedicles) and if so, there may be a need to perform a follow up surgery to remove the pedicles. This needs to be done from the back rather than this side so cannot be done at the same time. It is hoped they are intact so this is not necessary. After the removed bone is tested, follow up treatment will be determined which is likely to be radiotherapy.

The expected diagnosis possibilities for the cause of the bone degradation are:

- Melanoma (suspected due to Mum's history)

- Myeloma (due to Mum being diagnosed with the pre-condition to this cancer)

- Osteoporosis (which is considered unlikely as the full body CT has shown no signs of other osteoporosis symptoms)

There is of course a chance it is something else so it is all guess work until the removed bone is removed and tested.

The risks of the surgery are:

- Bleeding due to Mum being on a blood thinning medication and also that melanoma is a tumour which has a large number of blood vessels (and this is one of the possible causes of the bone fracture). Mum has been taken off the blood thinning medication so this risk is going to be controlled as best can be.

- Spinal cord / nerve damage. There is a very low risk of paralysis and a small risk of nerve damage that may lead to numbness or tingling in the legs.

- Cord fluid leakage that can lead to increased recovery times.

- Other standard risks of surgery (the above are specific to this type of surgery).

The doctor described it as being a big surgery but not uncommon (and one they have the requisite skill to perform well). He also recommended that it is performed as soon as possible as if the cancer is aggressive, the earlier the better (this is a precaution in the event it is melanoma).

So the benefits of this surgery are it will fix Mum's pain (largely) and restore her back function. This will get Mum off the pain medications (at least significantly reduced) which will reduce the grogginess she suffers. Also, they will have a real sample of tissue to test for cancer so we will get a firm diagnosis. Overall, we think it is the right thing to do. Mum is scared and that is very natural going into something like this.

The details:

- We are going to the pre-admission clinic on Thursday at Midday. We will speak to a nurse, doctor, surgeon and anaesthetist. This is a chance to ask any questions we have before the surgery.

- The surgery is scheduled for Friday with the time to be determined at 4pm on Thursday (that is when the following day's surgery schedule is finalised).

If you have any questions at all, please post them to this blog or email them to me (myprivateradio@gmail.com) or Mum. We have our chance to ask them on Thursday so everyone's input would really be appreciated. This is happening really fast and we may not think of all of the important questions in advance of the clinic. I have update the blog settings so anyone can comment. Any well wishes you would like to offer would also be appreciated!!!

I will update the blog Thursday evening after the clinic.

EDIT: The recovery time for the surgery is hospitalisation for 1-2 weeks

Tuesday consult

We have been advised the spinal clinic consultation today at 2.30 will also talk through the results of the CT. I will update everyone on the outcome of this later today.

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No news is . . . . no news

Just a quick update to say there is not much to update. We are waiting on the appointment time on Tuesday for the spinal clinic and we are also waiting on the results on the full body CT.