Saturday, September 19, 2009

You searched for that!

On my blog there is a site meter that shows the number of visits I receive. I can access my site meter and read where any referrals come from. Referrals from Google or other search engines make interesting reading.
Here is a short list of recent search results that were directed to my blog “Sid’s multiple myeloma journey”. (My reference posting is in brackets)

Multiple myeloma stage 0
How do you diagnose myeloma? (Pre diagnose)
Myeloma and hypercoagulable state.
Vision and myeloma. (Central vein occlusion)
Myeloma plasmacytoma. (History)

Bone pain myeloma; (Myeloma bone pain)
Myeloma pain relief; (Myeloma bone pain)
Could pelvis pain be multiple myeloma? (Myeloma bone pain)
Bone pain in humerus. (Myeloma bone pain)
How intense is myeloma bone pain. (Myeloma bone pain)

Multiple myeloma VAD treatment. (My VAD treatment for myeloma)
Myeloma stage 3 treatment plan.
Tempazepan medication. (VAD treatment for myeloma)
Myeloma stage I, survivor’s natural treatment;
Sore bum while on chemotherapy. (Transplant dry skin)
Cold sores and myeloma. (Transplant dry skin)

Stem cell transplant multiple myeloma. (Transplant stem cell collection)
Harvest stem cells in myeloma. (Transplant stem cell collection)
Myeloma stem cell mobilisation. (Transplant stem cell collection)
Baldness after myeloma transplant; (Transplant hair loss)
Relapsed multiple myeloma transplant will it help and work
Autologous stem cell transplant diarrhoea. (Transplant diarrhoea)
Multiple myeloma dry skin on legs; (Transplant dry skin)

Final stage
Final stage of myeloma. (Confronting death)
End stage multiple myeloma. (Confronting death)
Death from myeloma. (Confronting death)

Myeloma aggression or swearing or moods. (Dexamethasone)
Myeloma blog; (Sid’s multiple myeloma journey)
Positive affirmation forums: (Myeloma bone pain)
Affirmation survivor. (Myeloma bone pain)
Eating with myeloma. (Transplant food)
Foods for myeloma. (Transplant food)
Lemon juice for myeloma. (Transplant food)

Thursday, September 10, 2009

Health update September 2009

Previous update summary July 2009:
After having my second stem cell transplant in August 2008 all was going well, the 100 day tests were positive, IgG was down to normal, I was feeling good.
Then my 3 monthly tests in May 2009 showed my IgG had increased from 10 to 18, measured g/l in NZ (7 to 16 is the normal range). A month later it had risen to 22, the trend was heading up. Except for the proteins all other tests were OK.

This update September 10 2009.

IgG results: g/l (USA mg/dl)
24 Feb 2009 = 10.1 (1010)
18 May 2009 = 18.4 (1840)
16 June 2009 = 22.2 (2220)
21 July 2009 = 21.8 (2180)
18 Aug 2009 = 12.7 (1270)
It was decided to try to reduce the IgG early with chemotherapy before it got too high.
Valcade and Revlimide are not funded by Pharmac in New Zealand; we will try them on a trial or at a later date. A link to Valcade, Revlimide and Pharmac NZ summary is here.
Chemotherapy; cyclophosphamide (Chemo) and dexamethasone (steroid):
First 28 day cycle commenced Wednesday 1st July 2009.
Second 28 day cycle commenced Wednesday 29th July 2009.
Third 28 day cycle commenced Wednesday 26th August 2009.
Cyclophosphamide: 500mg day 1, 8, 15, 22.
Dexamethasone: 20mg day 1, 2, 3, 4 and 15, 16 17, 18.
Allopurinol: 300mg, 1 tablet per day.
Bactrim: 480mg, 2 tablets Mon/Wed/Fri.
As you can see by the 18th Aug result there has been a dramatic drop in IgG.
When taking the dexamethasone I have sleep problems for about 6 days but no other side effects. I get fatigue the day after I take the cyclophosphamide, no nausea and no other side effects. Bowels have been normal. I still have Aredia monthly.
Soft tissue plasmacytoma:
Two soft tissue Plasmacytoma developed on my skull as the IgG increased, a fine needle biopsy confirmed what they were. They were a pronounced lump, no pain or discomfort, getting larger as the IgG increased. Seven days after the chemo commenced they had reduced by 50%, at the end of the first cycle they had reduced by 80%. By the end of the second cycle they had disappeared altogether.
I have had 2 plasmacytoma in bones before when in relapse; June 2007 left humerus, October 2008 right humerus. Both required surgery for titanium rod prosthesis..
My inflamed sternum from continual coughing in June slowly reduced, disappearing mid July. That was painful, like a knife in my chest. X-rays showed no fractures.
At the end of July I had an uncontrollable sneezing bout which fractured a rib, right side, at the back mid height. Pain relief went from Panadol to Codeine to Paradex. I had to sleep on my back for 2 weeks and movement was restricted. It took 3 weeks to start to feel comfortable again and reduce the pain relief.
The rib fracture was a reminder that there is still residual bone damage from my initial state at diagnose in 2001 and relapse in 2007/2008 and I need to be careful. The bone damage can be seen on x-rays.
Peripheral neuropathy:
Peripheral neuropathy from 14 months on Thalidomide in 2007/2008 has stayed in my feet though has reduced. Only mild, doesn’t restrict me other than having to wear socks 24/7 as my feet can get cold. To help myself I massage my feet and take vitamin B+ and Alpha-lipoic-acid.
Chemo brain:
Chemo brain from my stem cell transplant in Aug 2008 has subsided, memory is better but I still have a problem remembering names. I still write lists of things to do, work procedures and technical terms. People’s names with a word prompt are kept in a notebook. E.g. Mary Smith, lady with a limp.
General health:
General health is fine. I am working 5 days a week 9.00 to 4.30. Drinking 2 L of liquid per day, mostly water. Myra and I follow the principles of a low GI diet; beans, pulses, protein, lots of fruit and vegetables. Walk for an hour both days in the weekends and 30 minutes at least twice during the week. Currently no bone pain or pain relief or restricted movement.
The vitamins I take are:
A man’s multivitamin: Mon/Wed/Fri.
Vitamin C: 250mg/day.
Cartia: 1/day to thin my blood.
Vitamin B+ complex: For peripheral neuropathy, 1 per day.
Alpha-lipoic-acid: For peripheral neuropathy, 300mg morning and evening.

Cyclophosphamide: Cyclophosphamide is a chemotherapy drug that is given as a treatment for many types of cancer.
Dexamethasone: Dexamethasone is a synthetic adrenocartia steroid. When used in the treatment of myeloma it can trigger the destruction of myeloma cells. My seek and destroy missile.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications. High levels of uric acid may cause gout attacks, kidney stones or renal failure.
Bactrim: Used as an antibiotic during chemotherapy.Aredia: In myeloma Aredia (a bisphosphonate) can delay and reduce the number of skeletal events and reduce bone pain.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Monday, September 7, 2009

Myeloma transplant - Exercise

How to approach exercise during my stem cell transplant for myeloma had me baffled. What exercises to do, when, how long, why, could I do it, will it have any good or bad effects.
My medical advisers said that being isolated and immobile during transplant would cause muscle wasting and may cause decreased circulation, DVT, pneumonia or respiratory complications.
My attitude was if I was to achieve a successful outcome I want to stack all the odds in my favour so if maintaining exercise during transplant was going to help my success then I would do it.

Pre transplant I had recovered from initial treatment, gaining strength and walking an hour a day.
Until my white counts dropped too low I continued walking at the hospital for 30 minutes at a time when I could, initially outside then the hospital corridors. My pace slowly reduced as my white counts lowered and fatigue started.
When my neutrophils were low and I was unable to go outside the ward I used an Exercycle in the ward and walked around the room.
The hospital physiotherapist gave me a range of exercises to do during transplant. Stretching, chest expansion, deep breathing, ankle strengthening, arm lifting and rotation, leg lifting all on the bed or standing up and generally tried to keep moving to maintain circulation and limit muscle wasting.
There were times when I could not exercise due to fatigue or tiredness.
Did it help? A little, if I did nothing my condition would have deteriorated. When leaving the BMTU I was fatigued, could walk slowly non stop for 15 minutes and had to rest.
I believe exercise kept me healthier during transplant and helped me recover more quickly.
This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Thursday, September 3, 2009

Myeloma transplant - Mucositis

From other myeloma transplant patients who had a myeloma stem cell transplant a common comment was about mucositis, mouth and throat issues.
From transplant day one I maintained a rigid commitment to following the recommended teeth and mouth wash process even when I didn’t feel like it. My attitude was not negotiable; it was in my interest to maintain a healthy mouth during transplant. The mouth wash was supplied by the hospital.
During the first transplant I had no mouth or throat issues. Unfortunately during the second transplant for two days I had difficulty with mucositis, saliva became thicker and being unable to swallow. To overcome this, my medication was given intravenously and pain relief increased. Once my white counts started to rise the mucositis disappeared.
Day 3 was when I first started to feel a change in my mouth. When my white counts started to rise as my stem cells engrafted it was on day 13 that my mouth began to return to normal.
Food and fluid intake became a hassle while mucositis was present.
[Food link] and [Nausea]
Preparation before transplant is important. My dentist was briefed about my transplant, a dental check was completed with no action required. Healthy gums and teeth help in the prevention of any mouth hygiene issues during transplant. My dentist gave good advice on hygiene, teeth and gum cleaning which was similar to the transplant team advice.
Mucositis and painful mouth and throat issues can be controlled by pain relief administered by the transplant team. It is short term, once the white cells start increasing the problem subsides.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Mucositis: Inflammation of the mouth and throat lining which often occurs after high dose chemotherapy.