This topic contains 9 replies, has 5 voices, and was last updated by 
andyg 9 years, 2 months ago.
Some forum members have mentioned having ongoing low neutrophil counts whilst on drug treatment outside of the hospital setting e.g. with revlimid, raising the spectre of infections arising between testing of blood for cell counts.
Are there ways members are managing this to prevent the possibility of severe neutropenia and the risk of serious infection arising?
The bone marrow gets a hammering with the longer term treatments and some of us are more at risk from the affects of this from severely reduced immunity Is the answer to stay at home away from people, but for how long? Or are there other ways people’s medical teams are approaching this
I would be interested to know.
Dusk
hi dusk, how are you?
one of the reasons that REvlimid is given in 3:1 week schedules is to give your bloods a week to recover.
My husband is often neutropenic by the end of the cycle. He takes GCSF once a week to boost the blood count. I think it is GCSF but could be something similar – basically growth factor i think – same stuff you take before the SCT to boost production. I think the steroids also have a bad effect on the bloods too. It’s basically a balancing game between keeping hte lid on the MM and causing other problems.
As for managing risk – my husband spends a considerable amount of time every day keeping the house clean. He limits exposure to other people’s children (we have 2) and doesn’t frequent places that are too crowded. We always carry the antibactierial hand gels with us whereever we go, and have them by all the doors in the house so visitors can use them before coming in.
So far, he’s managed to have very very few bugs, but it does take a lot of work to stay healthy!
I’m on partial remission, still taking lenalidomide and a low dose of steroids. My last blood test showed that my neutrophils were low, and so I’ve had a couple of weeks ‘holiday’ from the beastly drugs. I have another blood test next week. My consultant hasn’t really explained what this implies, though we’ve looked it up and seen that it’s made me more vulnerable to infection, but I haven’t been given any warnings and I don’t take any precautions. Most of the time we live in the middle of the country anyway and there are fewer infections around. I’ve been very lucky with not getting infections for the last year or so, so I’m keeping my fingers crossed.
So I haven’t really got any useful advice to give Dusk, except that I seem to be in the same situation, and looking for advice myself.
Lenalidomide gives me an upset stomach, but that’s another story…
Fiona: I noted from your other positing the decisions about ‘life’ your husband has made with your permission. Although MM might force a role reversal, being a house husband with more time to enjoy the moment I think is great.
My life / body has been changing since MM and as a result I am now on second line treatment. Neutrophils have got very low a few times. But I have also had infections (even hospitalising ones), which would not help. GCSF injections seem to be used by some as you mention. But when these are deemed necessary could vary for each patient and clinicians make the decision based on ones overall situation I suspect. Hand Gells!!! What about soap and water? Just coughing / sneezing releases germs which we can pick up from visitors, who may not have an obvious infection, but may be carrying one. Also I noted infections from the food / stomach route when neutropenic are more likely, so certain foods are to be avoided at this time.
Frances- your consultant’s approach seems to be ‘treatment holiday’ to allow your counts to recover. When neutrophils go very low risks of infection increase, especially if your existing immunity is also low in order to help fight them. Whether you need to take precautions or not depends on your individual situation.
You should ask your consultant that if you do not have signs of an infection why he/she chooses to give you a treatment holiday, rather than GSCF to at least temporarily, (which is how GCSF works), boost the neutrophil count to allow treatment to continue.
It seems different approaches to dealing with low neutrophils on treatment are being taken, a bit like the approaches to the initial treatments to MM it seems, because there is no way outcomes from one approach versus another can be predicted.
This journey is indeed a marathon!
Dusk
Hi dusk
sorry, i should have been clearer – soap and water are top of the list. our hands and faces have never been cleaner!
Philip was told to eat as though he were a pregnant lady, so yes, some foods are avoided. (i’ve told him this does not mean claiming to crave cake and chocolate!)
Thank you Dusk and Fiona – I’d never heard of GCSF but I’ve looked it up and it’s useful to know about.
Hi,
Just to add to this debate in case it is of interest – my Mum has often suffered with low neutrophils while on treatment, most recently her neutrophils dropped to 0.3 while on Pomalidomide causing her consultant to stop treatment. Within a week of stopping her neutrophil count rose to 0.9 and now a week further on is at 2.4! She is on no treatment at the moment despite PPs of 45 and light chains of 11,000, her platelets are at 320 and Hb 10, she is feeling very well and has no pain! She has had no problems at all with infections and her kidney function is normal.
At the age of 86, having had myeloma for 7 years and the whole range of treatments I think this is all pretty remarkable. We are due to see her consultant in the next few weeks and will see what happens next (if anything).
As we often say it is a very individual disease.
Jill
Hi Dusk.
I was on RCD for 22 cycles and I was always neutropenic. My neutrophils dropped to 0.5 a couple of times. I was told to give the Cyclophosphamide a miss for a week that’s all.
As to living with low neutrophils I made family and friends aware how dangerous it was for me if they turned up with infections. I steered clear of busy pubs or went in at quieter times, something I still do now, and keep away from young children in case they had chicken pox! I’ve never had chicken pox so it’s very dangerous for me if I get infected with it. I was told by my consultant if I came into contact with someone with chicken pox or if I came into contact with someone who had been in contact with someone with chicken pox I had to go to the day unit ASAP and get an injection as a precaution. As happened once. Food wise I was told to eat as a pregnant woman was advised to eat. Which wasn’t a problem really because I was off my food anyway. Otherwise I lived as normally as possible flew to Greece etc. With Myeloma you can’t afford to put things off till your better.
Every day is a gift.
Andy
Hello Andy
22 cycles of RCD!!! Your bone marrow would have got quite a battering. Interesting they kept the cyclophosphamide in a triplet combination for so long a period, but as they say each of us is individual and the treatments given will be based on our doctor’s experiences of treating our disease. No wonder POM is easy for you after all that.
As to avoiding chicken pox, a highly contagious airborne disease. Realistically you can only avoid friends / family / visitors who can be ‘warned’ to inform you if they or their child has had recently or currently has a contagious illness/ infection. In the real world e.g. waiting in hospitals, GP surgeries, airports etc. you have no idea what people are carrying. Small children and babies once a source of delight can become something to fear?
You are right in that you cannot stop living the life remaining to avoid these things and statistically their are many other accidents that are greater risks to shorten life.
Also re: you other post, yes MM is now seen as a clonal disease with distinct clones that react as separate entities to the treatments given, that is why relapse occurs, a dominant clone can be wiped out on one treatment to let a very minor clone not affected by the treatment grow and take over in time leading to relapse. If scientists ever find a way to reverse the behaviour of cancer cells in our body, so cancerous cells loose their cancerous ability to grow uncontrollably, then a cure may arise one day.
I differentiate being better from feeling better. How I feel and what I need to do now as a necessity is how I try to deal with life now. We all have our own priorities with an unpredictable situation.
Great that you get away regularly between cycles of treatment and your indominitable spirit is evident. Judging by your running pics bone disease is not a major issue so travel will be more fun.
As you say every day is a gift- whether you have MM or not.
Hi Dusk.
We don’t plan our holidays around my cycles and I don’t stop taking my drugs whilst away. That means I’ve been popping the drugs almost constantly since diagnosis October 2011. That’s a lot of harsh chemicals that have passed through me! I know when POM is no longer effective my options are limited and I will move onto some harsher drugs Bendamustine has been mentioned as a next line of treatment. Still that’s in the future no need to worry about that.
I no longer run. I haven’t ran since late 2009 when the first signs of Myeloma appeared though I wasn’t diagnosed for another 18 months by which time I had lots of damage to my vertebrae. I’m now 3-5 inches shorter than I was depending upon the time of day I’m measured.
When I’m asked how I’m doing I find it hard to answer because I feel good but that good is compared to how I felt on my previous treatment. I gave the same reply when asked when I was on RCD I now know I wasn’t feeling good lol.
Every day is a gift.
Andy
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