Sunday Summary – 28th May (Symptoms)

Three weeks on from my previous Sunday Summary and a chance to take stock of where things are. This is a summary which is a good stopping off point if you are interested but don’t want to wade through all my posts.

I am now very much out of hospital and undergoing chemotherapy as an outpatient. I am into my second series of injections and have regular visits to both the local doctor and the hospital to have Valcade injections.


I have started to notice patterns in my symptoms – whether these are just down to me being more observant or else part of a long term pattern remain to be seen, but here they are.


Having had a much better week, last week the sleeplessness has returned this week. I can only put this down to the steroids. They were described to me in hospital as acting like ‘Super Caffeine’ and the high 20mg dose on 4 days of each chemotherapy week certainly plays its part.

Even though I am sleeping better than in the hospital due to the fact that I am going to the loo less – it is still a fact that I am up 2- 3 times in the night and awake between 4:30 and 6:00am. I am trying to go to bed later to counteract my listlessness – as I have always struggled to sleep when turning in too early. Yet two days ago I crashed at 9pm – then woke at midnight and struggled to sleep.

Sleep remains a challenge, during my Steroid sessions (Tuesday, Wednesday, Friday, Saturday)

Greasy Forehead / Hair

I have noticed that during my chemotherapy weeks my forehead and hair have got very oily / greasy in a way they haven’t since adolescence. I am again linking this to the steroids at the moment. I can only assume the hormonal effect of the dexamethasone is to prompt the production of the oils.

At least my hair is not falling out!

Dry Hands

In contrast to my head, my hand have become excessively dry – this again seems to be a steroid effect – noticeably more so in the chemotherapy weeks.


Neuropathy is a known side-effect of Valcade and is something which is closely monitored whenever I am seen by the nurse or doctor. It is an effect on the nerves in the hands and fingers. If it gets to bad then the treatment has to be paused or even stopped so it is quite serious.

So far I have only notices mild symptoms of numbness/ pins and needles when resting my hands or feet for prolonged periods. The numbness runs along the lower (resting) surface of my hands or feet, and disappears with movement. There are no further symptoms on this but each time I am observed I am asked about my ability to feel small objects such as buttons, to presumably check my senses.


During my week off from chemotherapy all of the above disappeared. However, another side effect was apparent towards the end of that ‘off week’. That was stomach and leg cramps. Again minor but apparent on several occasions. These cramps in the lower abdomen and in my right leg were short but intense contractions of the muscles. It seems this is dues to a withdrawal from the Steroids – so I will see if it is repeated in coming weeks.


Shoulder pain has almost completely disappeared. This was the root cause of my observed problems in the past 6 months. It remains stiff but that is all. No doubt a sign of the positive effect of the valcade on the myeloma.


Feet remain swollen and puffy – due to a combination of clot, kidney and steroids. My left foot is especially puffy but walking does help and it has been possible to control by raising my foot as well.


My kidney function remains very poor. Measured as a GFR value I plan to post in much more detail on this the most concerning of my symptoms.

In summary, my kidney should have a GFR value of 90+ at my age. My GFR has stubbornly remained at 10 in recent weeks and although this has been a very slight improvement from the earliest days, it has a very long way to go. 

The poor kidney function caused by the myeloma is the reason behind my need to drink copious amounts of water and the knock on effect of going to the loo. More importantly it is behind the need to manage my potassium levels through diet and drugs.

Thankfully potassium is under control and has been measured regularly as being in the normal range (3.6 -5.2).

Long term though the kidney function  (GFR) needs to improve dramatically and however healthy I might feel it is going to be an anchor on my overall recovery.

3 thoughts on “Sunday Summary – 28th May (Symptoms)

  1. Thanks for sharing where you are “at” now & updating your current symptoms. A helpful summary for prayer & sharing with friends who ask how you are & also praying for you. There are lots of positives aren’t there, but your lonely kidney seems to be the thing that needs the greatest focus for improvement!

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