Chemo brain

Chemo brain, it's real. In 2001 I had VAD treatment for myeloma followed by an autologous stem cell transplant (ASCT). The treatment and ASCT included chemotherapy drugs Vincristine, Adriamycin, Melphalan and cyclophosphamide. After the ASCT I started noticing memory issues.

There was an intermittent short term memory loss.
At times a short attention span.
I had trouble remembering people’s names.
Difficulty in finishing sentences, some words were not there, or difficulty finding the right word.
Sometimes I could not remember the detail of conversations.
At work technical terms that I used infrequently were hard to recall.
I would plan to do things later or the next day and then forget about it.

I had to resort to writing notes for myself, make lists and have had to get help from whatshername, the lady I am married to. She gives me a word to help finish a sentence, a reminder to use a list or help in recalling a name.
After the first few months of chemo brain whatshername said my selective memory matched my selective hearing!!!
Fortunately it has improved over time though has not gone away completely. Lists and notes are essential.
I have spoken to other chemo patients and many have had a similar experience.
After my second ASCT in 2008 chemo brain returned and remained for 6 months when there began a gradual improvement. Twelve months after ASCT2 I was back to a pre transplant condition, chemo brain still there but more manageable.
The major myeloma and cancer web sites are now acknowledging chemo brain and are a good resource for background information.
During ASCT recovery I went to the local shopping mall by myself, walked around and had some good time out. Got back into the car and found my wife’s Foodtown card in my pocket. Then realised I left the shopping list at home but recalled there were 4 items on the list. So I walked the isles but nothing clicked. Oh dear, back home for the list. Another lesson learnt.

Myeloma transplant - Recovery

Leaving the BMTU after my autologous stem cell transplant for myeloma was a test; the hospital was a secure base. There I had been dependent on others, now I was returning to independence. It was like cutting the umbilical chord from Mother ship.
My plan on leaving the BMTU was to split my time through to 100 day post transplant into 3x3 week groups. This gave me a 3 week at a time focus not looking too far ahead and reassessing at the end of each. For the first 3 weeks I took life one day at a time, only looking back at the end of each week to assess progress.
Myra was at home to help my transition which made it less stressful for me.
Travel to outpatient appointments had to be arranged until I could drive again. Driving recommenced after 10 days at home giving me more freedom.
Nausea was present and treated with Cyclizine for four weeks after coming home from transplant. I began to regain my appetite after two weeks, gaining weight and starting to feel better.
Hair re-growth was noticed four weeks after coming home.
Exercise was slow and steady, limited at first by fatigue. Initially walking was to the third power pole from home and return, increasing one pole at a time. My goal was to walk every day with an increase in distance every second day. Three weeks after coming home I was walking 30 minutes non-stop daily.
We live in a two story house so I used the stairs for additional exercise. Initially one step at a time, then two steps and a rest, then advancing to resting only at the landing. We celebrated when I was able to walk the stairs non-stop.
Fatigue was present for the first two weeks then slowly decreased.
After coming home I noticed I was suffering minor memory loss during conversation, mainly recalling some names and words. This was considered a classic case of “chemo brain” taking about 12 months to revert back.
I was still suffering from back pain especially my compressed vertebrae T8. A 15 to 30 minute rest on the bed usually eased the discomfort. This got progressively better over six months.
During recovery we made Friday our fun day, a day to have some fun, go out for a coffee, a drive or visit someone.
At the post transplant 100 day consultation it was considered I had made a good recovery and was in the plateau stage. Mission accomplished, time to have fun, time to let loose: and so we did.

Links:
Myeloma Transplant Days -02 to 05
Myeloma Transplant Days 06 to 11
Myeloma Transplant Days 12 to 15
Myeloma Transplant Days 16 to 22

Glossary:
BMTU: Bone marrow transplant unit.

VAD for myeloma, end of first cycle

A summary of the end of my VAD cycle 1 Monday 16th July 2001, treatment for myeloma.
My response to VAD and Aredia after the first 28 day cycle was excellent. IgG reduced from 80g/L to 26.4 g/L.
Reaction to VAD wasn’t too bad, the mouth and throat were OK, minor hair loss so I had it trimmed back to a No 2 not realising how much heat loss it would give. It was winter so I wore a beanie or cap all the time even in bed.
There was a minor deterioration in eyesight.
Had some constipation so used the Coloxyl laxative successfully.
I suffered hiccups for about 2 hours on 3 days early in the cycle.
Towards the end of the first cycle I started to suffer dry skin and lips so applied moisturiser and lip balm.
It was a struggle to get used to drinking 2L of fluid a day so I used a 500ml water bottle as a guide.
Concentration was down, probably the first indication of chemo brain.
Nausea was an issue very early on, so I used Maxolon all the time and experimented with ginger products. Both helped especially Maxolon but it never went away making eating a problem. Small helpings meant my food intake though reduced was maintained.
What surprised me was the number of pills I had to take in the morning. The maximum was 16 which I took in groups of 4, a new experience and a struggle for me.
Bone pain did not change, the pain relief (morphine and panadol) served its purpose well reducing a lot of pain. Still had to sleep on my back, the ribs and collapsed vertebrae were always a constant dull pain. There were sudden pockets of bone pain elsewhere that liquid morphine was used as break through pain relief.
Dexamethasone made me verbally aggressive, more abrupt and expressive. Mood swings from Dexamethasone were present occasionally during the first cycle. Sleep disturbance was a big issue so I had to resort to sleeping pills.

Health update #01 4th Feb 2009

A health update from November 2008 through to today.
18th November was my post transplant 100 day test appointment day.
All results came in within the normal range.
The main suspect IgG was at 39 in June 08 now down to 9.9
Between 7 and 16 is normal.
I am now off the slow release morphine m-elson though I had some withdrawal symptoms when I reduced the morphine. That was the second morning being off the pace, just wanted to be alone to deal with the moods and three days of restless legs at bed time tapering off over seven days.
The bone fracture at the top of my left humerus has now healed with no issues in that arm now.
The bone in my right humerus which had the lytic lesion and was rodded in October 08 has healed. It is still work in progress for total use, mainly overhead reaching and using the arm behind my back.
There has been an increase in peripheral neuropathy in my feet. That is surprising as I stopped the thalidomide which was the original cause back in May 08. The fingers are back to normal. My haematologist has assured me that no medication since then would have caused peripheral neuropathy. Symptoms are cold feet and numbness in feet and toes. It may be the high summer temperatures we are having or not using my feet enough at work. I have to wear my socks 24/7 except in the shower or on special occasions. To help myself I am taking Vitamin B+, massaging my feet and legs with a foot roller from the $2 shop and with emu oil. Myra lets me use her foot spa which leaves my feet feeling good for about two hours.
At the end of November I drove my car for the first time since last May.
I returned to work at the beginning of December starting on four hours a day for two weeks then five hours a day. In January I increased that to six and a half hours a day. No problems at work with fatigue or back pain. It’s good to be back with my work mates and having that mental stimulation, a feeling of being “normal” again.
After being force fed all the nice Christmas food I recommenced our low GI diet in the new year. My weight is stable at 68kg.
Walking one hour at a reasonable pace is no problem now. That is done both days at the weekend and at least 30 minutes on each work day.
Chemo brain has returned, forgetting names, not finishing sentences without prompts.

Glossary:
IgG: Proteins produced by plasma cells.
Peripheral neuropathy: Damage to the nerves, usually of hands and feet.
Thalidomide: A drug used to reduce the growth and survival of myeloma cells.
Haematologist: A doctor who specialises in the diagnosis and treatment of diseases of the blood, bone marrow and immune system.