Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Following my appt with the immunology team at the Royal London a couple of weeks ago they have said that as all bloods and immune system cells are in the normal range they are taking me off the sub cut immunoglobulins to see what happens.
I will have some bloods done in early September to see if my IG levels are holding. So apart from my blood pressure pill (another side effect of the SCT) I am currently medication free and won't be missing sticking needles into my tummy for a while at least!
Also they have said to arrange the MMR live vaccine as well.
Time will tell if my immune system will now function without any help.. Worst case is back on the immunoglobulins later in the year!
Will keep you posted on how it goes.
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This is great news, I bet you are really happy to get some relief from the injections!
I made the decision to come off immunoglobulin about 18 months post-transplant. I went on to pick up loads of infections but I had just had enough of being on stuff and I figured it was time to find how my immune system would do. Here’s hoping you get a really smooth ride!
I’m really interested to read you are not taking penicillin? I was told I had to be on it for life. It’s not that much of a drag but it does throw up some side-effects every now and then, so I was interested to know what they had said to you re:penicillin?
All the best
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Initially I was also told penicillin for life.. Then when I was on the immunoglobulins the immunology team questioned this as their view was if your immune system is functional why do you need them.. When I asked the haematology team they would say nothing on its own is 100% fool proof so take everything.. which didn't seem particularly scientific, so I came off them.
I was then just on Acyclovir.. which, to be honest, I just kept forgetting to take so I decided to stop all together. (Please don't try this at home folks!). The immunology team didn't seem too worried and their view was if I did get shingles etc then a good dose of Acyclovir should sort it out at that point..
So there are two schools of thought with the penicillin..
1) If my immune system is OK then why take it and then if I need it hopefully it will be more effective. (this is my preferred option)
2) They immunology team have completely missed this now I am coming off immunoglobulins! (this is my bury my head in the sand and keep everything crossed option 1 works option)
I have been on them for 3 years now and it is 3 years since I was immuno suppressed with cyclosporine, and 6 years since the SCT.. So I have been patient and I am hoping that now it will all be OK.. Bloods in early September will be a good indicator and if the IGs are dropping through the floor then back on the injections.
Hopefully that isn't the case but I have accepted the fact that I may be on them for life, which whilst an inconvenience, if someone had given me the option when I was first diagnosed of getting through the ALL and SCT, being healthy and just having to have an injection for 45 minutes once a fortnight I would have taken the deal for sure!
I do find it fascinating how different SCT centres do things differently. The next check-up with my consultant is in September so i’ll ask him about it then. I get the distinct impression there is a lot of guesswork in blood cancers and their treatment. I remember when I was having a tough time about 8 months post transplant, I was taking a lot of tablets and he said, “let’s stop them”. Just like that I stopped anti-viral, anti-fungal, and some other stuff I was taking. It did make me wonder what the point of me taking it was if it could be stopped just like that!
Like you say, the penicillin is only two tablets a day and I can definitely live with it given where I’ve been, I just like things to have logic. I know this is a futile endeavor, especially in SCT land, but that doesn’t stop me trying!
daughter is only on HRT and Levothyroxine, and that’s been the case for a good few years now. She had shingles and yes, a hefty dose of acyclovir sorted that. They discovered the low thyroid levels while she was in for her allo, most likely the result of radiotherapy to mediastinum plus one of her trials.
She had such a bad winter (lots of nasty infections needing antibiotics) the year before last, that they decided to give her a big regular boosting of I/V immunoglobulins to try to get her ‘base level’ around 6. They will check to see how she’s done in around September time, a bit like you, Paul.
Such a great conversation and all power to your immune system Paul. It will be great for you not having to stick those needles into yourself.
As Greg says, it’s so interesting the differences between SCT Units and as I was discharged by my team last year I don’t actually think much about it all apart from reflecting back due to being on this Community.
I do go see my GP every three months for a chat and at this point we have agreed not to change anything - "just keep on enjoying life" she will say, but do have full bloods done every 6 months.
I am allergic to Penicillin so am on Clarithromycin for life to cover bacterial infections like pneumonia, skin infections. My treatment made my Spleen a spare part in my body so my immune system filter is not working that great so making me less likely to fight some infections and having had Lung Fungal Infections, RSV Virus, pneumonia and Sepsis a few times over the past winters I will keep taking them. I do have a stock of acyclovir and antibiotics just in case but so far not required.
I also take Adcal-D3. Due to all the skin treatments I have had over the years I have to be very careful in the sun so just need to boost my Vitamin D.
Keep well everyone and enjoy this great weather but we have thunder and lightning at the moment.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
My team said before SCT i would be on pencillin for life so that seems to be their policy rather than my particular circumstances. Apart from the unpleasant taste I'm not aware of side effects. But i do worry about anti biotic resistance and whether its a good thing in long term.
On the plus side i no longer seem allergic to pollen and cats. I still don't like dust though. Will have to see what happens during harvest as that usually throws a lot of dust in the air.
Ha! We had that storm about 2am, Mike, loud and flashy!
I found Adcal d3 gave me awful indigestion so found a source of just d3 and my GP checked and advised about dosage, I take one capsule 3 times a week and it causes far less trouble! I suspect Adcal d3 is incredibly cheap!
..... now a heat wave with us..... just waiting for the snow LOL
I am also on 30mg Landoprazole am/pm (for my Hiatus Hernia) so I suspect that this deals with any indigestion.
With regard to the penicillin I was told for life as well.. perhaps this has been missed by the immunology dept now that I am off immunoglobulins but I am going to see how I get on. I just know to be on full alert if I start to feel ill and there will be no hero stuff here. Straight to the GP.
But they did ask about penicillin when they phoned so perhaps it hasn’t been missed. I go to the department that deals with all the HIV patients so they have years of experience with immune system disorders.
Watch this space. Time will tell!!!
A quick update...
A chesty cough and sore throat began on Friday evening .. typical.. visit to GP Monday morning and amoxicillin prescribed. I am well on the road to recovery now the meds have kicked in.
On Wednesday i received a letter from the late effects CNS which confirmed that they thought i was taking Penicillin V prophylaxis for life.. So I questioned it and asked for someone to clarify the confusion. My Leukaemia consultant has now confirmed back on the penicillin daily .. forever!!
In some ways I don't mind as rather safe than sorry and at least I have been given a definitive answer. He has also booked me in to come and see him in September as he hasn't seem me for around 18 months himself to see how I am getting on.
I’m glad that you’ve managed to get on top of the chest infection, hopefully you’ll get a bit of a clear run now.
Interesting re: the penicillin, I am not sure what the science behind it is, but I suppose if the experts say it’s needed, it’s probably one of those things to just get on with.
Not sure how you feel about seeing your consultant again? I have to see mine every 4 months (due to nature of myeloma I will never be discharged unfortunately). I oscillate quite a lot between thinking it’s a good thing because at least I get checked up, but on the other hand it’s a constant reminder of all the bad stuff. My next one is due in September and I know in a few weeks i’ll start re-living all the memories that are mostly buried away now.
The other thing your post reminded me of is that I’m not convinced my team are brilliant at keeping their records up to date. Every time I go for a check-up, my consultant always asks me what medication I am taking and I keep thinking “shouldn’t you know?” - I reckon I could tell them anything lol!
I get on really well with my consultant and look forward to seeing him and having a chat about how things are going. During my treatment he was the one that had to have the hard conversations with me, but that also meant he got to know me really well and he understood how I functioned mentally. He was really supportive when I was discharging myself and hen when I was going off to Greece to sit on the beach, drink cold beer and eat ice cream when I was 3 months post transplant. He understood that I needed to get back to some sort of normality, saw the benefits my health got from doing it and put great plans in place to facilitate it. I met him for coffee outside clinic hours when I wanted a very frank conversation about life expectancy so that he didn’t have to be “ on the record’ and he was happy to do this for me.
i always assume that who ever I see needs a quick update of the meds I am taking as it saves them time looking it up so I get more time talking about what I want to..
Chest infection has gone and I had my live MMR jab today.. hopefully I won’t be feeling rough in a 7 to 10 days as next Friday I am out with the guys I go skiing with for a mid summer beer and curry night... I can probably guarantee most of will be feeling rough on the Saturday morning though..
daughter had MMR a bit early, she had the fever symptoms of the same sort of time scale and levels according to the incubation periods of each illness, a bit of a temp but not feeling too bad with rubella, followed a few days later with a high temp and not feeling quite right with measles, a lower temp plus some jaw-ache with the mumps which has the longest incubation period. All cleared in around a week. She did phone in as the measles temps were pretty high, but with very little else in the way of specific symptoms (other than a bit ‘off’) her team suggested she just took it easy and kept a watching brief.
The booster had no problems. But she was in process of finding out whether her levels might need a further booster dose or not, not sure if she yet knows that.
That’s really great you’ve got a good relationship with your consultant, I think it really helps. I get on with my consultant too, he’s a similar age with similar age kids, so I think that helps with the connection. The comment about him not knowing my medication was just a joke, I know they’ve got a really tough job keeping all the records up to date. The thing is the only medication I’ve ever taken is what he’s proscribed, so I’ve really nothing to tell him that he hasn’t told me. I wonder sometimes if I should tell him something unusual and see if he asks any questions!!!
I hope things go well with the MMR (hope you got a sticker or a lolly?). I must admit it made me feel pretty rough I think about a week after the injection - no idea which one of the letters it was, but I was laid up unable to get out of bed for a few days - but it soon passed and there’s every chance you’ll sail through it really easily as I think many don’t pick up any side effects.
And like you say, it’ll prepare you for the beer and curry hangover anyway!!
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