[tallulah55Participant]

Over the moon to say my dear husband was discharged from inpatient to halfway house near the hospital  yesterday and we are due to travel North home on Friday morning.

After a couple of days when his temperature kept spiking ( we eventually realised the canula was becoming infected which was most likely the cause) everything settled down and he hes been sent away with lots of good luck wishes and smiles.

Actually his neutrophils were only 0.00 for one day and increased daily to 0.01, 0.07, 0.90 and yesterday – 5.0!He had daily GCSF injections which speeded things up I think by about a day. So he is now no longer neutropenic and despite having fairly low platelets, all his bloods are fine and he isn’t even that tired anymore. As he is 66, not particularly fit and with one kidney we are over the moon with his progress.

We kept a tight watch over all side effects in hospital and as I was almost constantly there ensured he always had plenty of fluids, anti-emetics before nausea got too bad etc. He didn’t have bad mucositis at all and he started a regime of chlorhexidine mouthwashes before admission which perhaps helped ( Difflam when it was a bit sore) and a vg anti-emetic – odnanestron, seemed to work well when he had 2 – 3 days of feeling not that good and is just finishing courses of ant-biotics and anti-fungals. This hospital seems to give anti -virals ( to lessen the chances of getting shingles) for a couple of months and he had magnesium and phosphates some days when he wasn’t eating as they were low. He probably only had 2 or 3 days – Days 8 – 10 – when he felt v tired and not too good in terms of his stomach thankfully.

All in all I don’t think the experience was anyway as bad as we had imagined – were we lucky or are the bad experiences fewer than we had thought? Difficult to say as everyone is different but I asked Kevin if he wished to pass on his thoughts immediately after discharge to others and he said ‘don’t be frightened, don’t believe all the scary stories and try to keep a sense of humour.’ I’m smiling right now.

[CarolsymonsParticipant]

Wow he has done really well. I still think the SCT is like giving birth….you ignore the horror stories and approach it positively hoping for the best. I am almost 5 months post transplant….blood test today, so hopefully results will still be good when I get them next week. I was in stringent complete remission at day 100 post transplant, so hope it stays that way for a long time! Just a few more weeks at work, then I am returning home to Australa…..can’t wait!

Carol

[wifeofParticipant]

Hi,

I’m new to this forum but I have been following Kevin’s story with great interest. My husband was diagnosed This January with non secretory myeloma and has just completed his initial treatment and we are about to embark on the SCT journey. I was wondering how Kevin was doing now you are home after his discharge after only 12 days we were told plan for a four week stay at the NHS hotel and anything less is a bouns!

[tallulah55Participant]

Hi Carol

I’m pleased to know all is going well for you too! I hope the blood results are looking good and you must be getting v excited with your forthcoming move to Australia. One of the pluses I guess that comes from having ‘cancers’ is that you can appreciate the good things in life more and become rather good at being hedonistic and then tend not to dwell on the not so important. I’m sure with the ups and downs of myeloma it makes even more sense to focus on doing the things you really want to when you are well  and as such Kevin is looking to buy a little sports car to use in the summer to visit places in the UK that we don’t normally think about for weekends until we feel confident about going abroad again next year.

I’m sure with the forthcoming trip you must be focusing less on the myeloma as well which must be good. We got in the habit when Kevin was having monthly, then quarterly and then annual scans post kidney cancer not to try to think about it all until the day before the scan, even though the days waiting for the results were always anxious, and its ironic but in quite a few ways our lives were better since then – not so carefree admittedly but we enjoyed it more.

You say you are in stringent remission which is fantastic news – I thought the criteria for this included a bone marrow biopsy, did you have one……willingly?!

Best wishes

 

Nicki

[tallulah55Participant]

Hi

As we live so far (50 miles) from the cancer centre where Kevin has his treatment we were advised that Kevin may have to stay in for a few days longer post SCT because of the risks of being so far away, so we were expecting a three week stay in the area although Kevin was determined to get home as soon as possible!

From my understanding a hospital will not discharge you until most importantly, the neutrophil count is at least 1, any diarrhoea and vomiting is not intense and is manageable, and thirdly, temperature is stable. Earliest to go home is 10 – 11 days, typical is 14 – 16 days, depending on the above criteria. Any need for supportive IV infusions eg for platelets or red blood cells if these go v low are another indicator – Kevin didn’t need any although you can get these as a day patient in some centres I believe.

As Kevin had some d and v but not much, his temperature spikes calmed down and his neutrophil level shot up, he could actually have come home on Day 12 but we were concerned that if we came straight home and there was a problem ( a sudden temp rise) then things could have escalated quickly. that would typically be a temp spike of above 37.5( febrile neutropenia) which could have quickly led to neutropenic sepsis ( temp above 38.5), this is the danger.

Kevin had urosepsis 3 years ago before he was diagnosed and we were amazed how quickly it came on – I was away on business and he called to tell me he thought he had flu coming on and 3 hours later when he told me he couldnt stop shaking and shivering and had pain in his kidney I thought it sounded nasty and got him blue lighted to hospital where he had 7 days of IV antibiotics. So this risk of infection and sudden onset sepsis when neutrophils are v low is the real danger therefore the frequent obs of temp/pulse/SATS/ blood pressure post SCT to look out for this. At the onset of any sepsis temp will rise, blood pressure and SATS can fall

I think having plentiful fluids during the process makes a big difference – not only to flush the chemo through and to keep hydrated but to ensure the kidneys are kept working as well so nothing stagnates. He had a couple of days ( when neutrophils were lowest) when his temp spiked to 37.9 a couple of times and was put on IV antibiotics just in case which is often the protocol and I’m pleased they did. He always made sure he had at least 1.5 litres of water a day although he normally has double this and if someone can’t drink enough due to nausea or vomiting there will be intravenous hydration.After the chemo until discharge actually his pulse was quite high but this is another side effect that they watched.

Now on day 18, his digestive tract is almost back to normal although he has waves of nausea and then takes metaclopromide which really helps although he still wants very bland food. The fatigue is the big thing now – everyone I think gets this – just getting up and showering is exhausting which will hopefully diminish over the next 2 to 3 weeks, and he has started to lose hair at quite an alarming rate. We’re watching this to see if he will need to have his head shaved but as he lost about 50% of it during the last cycle or two of CDT, he might not lose it all.

It is a short time from when your husband was diagnosed until treatment so there is so much for you to take in, no wonder you must be shocked and desperately needing information. It is my view that the more knowledge and information you have, the more confident you will be to offer your husband practical support and to be proactive in his care whilst he is in hospital – if I can do anything else to help I am more than happy to.

We both feel that the whole process so far has not been as bad as we expected and we are forever humbled by the high quality of care Kevin has received. We know, from 2007 when Kevin had a 20% chance of 5 year survival after his kidney cancer diagnosis, that statistics are out of date. There is a huge increasing arsenal of drug treatment options for myeloma now and even though the hardest part for MM patients and their families is the fact that it is still not curable, but treatable, we feel unanimously there are are far worse diseases that you could get.

I wish you both well

Nicki

[CarolsymonsParticipant]

Hi Nicki

Yes I had the dreaded biopsy at day 100….bloody painful too as she went in 3 times after adding more local anaesthetic…..ouch! The biopsy previously before collection was a breeze….different doctor! So the biopsy showed less than 1% cells which confirmed the blood test results. Had another blood test last Friday (today it is exactly 5 months since transplant) so anxiously awaiting results which should be back Thursday.

I cannot wait to be back home in Australia!

Carol

• This reply was modified 10 years, 5 months ago by  Carolsymons.

[CarolsymonsParticipant]

Hi Wifeof?

I was discharged on day 15, but luckily came through the SCT with no infections or other complications. I was also told to expect 4 weeks incarceration! Thank goodness that didn’t happen.

Carol

[wifeofParticipant]

Thanks Carol and Nicki, like you say there’s a lot to take on board. I like to try and find out as much as possible where as my husband likes to deal with things in bit size chunks.

He responded  very well to the initial treatment of cybordex with very few side effects so I’m hoping that he gets through this next stage without too many problems. I’m preparing myself for the worst them anything less will be a bonus!

The myeloma team in Oxford have been excellent and I know we are in good hands. He is going to have his work up done on the 21st July and then on the 28th he will have his cyclophosphamide infusion then as you know 10 days of growth hormones then harvested 6th and 7th August fingers crossed they get enough.

We have been told that the side effects from this process are minimal but I would be interested to know your experiences

thanks

 

[CarolsymonsParticipant]

Hi

The only issue I had with collection (mine was done with etoposide not cyclophosphamide) was pain from the Neupogen shots. It was so bad I even had to take painkillers which I never normally need. But…..they say no pain, no gain and I gave them 15 million cells per kg after 4 hours on the machine. They did insert a Hickman line prior to collection too, so it was all very easy in my case. I did lose hair though, in patches after the etoposide. Oddly though I didn’t lose any more hair after the melphalan prior to SCT……but by then I had already had it clipped as it was looking moth eaten after the etoposide.

Carol

[tallulah55Participant]

Ouch! I can imagine Carol how it felt but when you got the results I imagine you felt it was worth it. You do wonder how much individual technique affects discomfort and duration of the biopsy. Kevin’s initial one ( to confirm diagnosis) took about 45 minutes in all I think and he said afterwards ‘never again!’ The second one he had in a  different hospital only took 15 minutes but I had asked that he had a sedative beforehand – not sure if that made it quicker or not but it certainly made a huge difference to Kevin who didn’t even realise it was being done.

Kevin was pleased to find out that our hospital doesn’t routinely do a 100 day post SCT biopsy, apparently that is only done if treatment is through a clinical trial.

You must be excited with your timing, not a bad summer so far here and soon after you get to Australia you can look forward to summer there!

Nicki

[tallulah55Participant]

It’s interesting how different hospitals have slightly different protocols but if your husband is being treated at the JR in Oxford I’m sure he is in very safe hands as it has an excellent centre. We have been thinking of moving at some point nearer to relatives and the Oxford area would be first choice as it is near family and friends and because of the JR – any potential new home will have to be near a vg myeloma centre as we are aware that throughout Kevin’s life he will need that at varying points.

You sound very much like me in your need to find out as much as you can – Kevin’s IgM myeloma is quite rare, as is non-secretory, and there are very few dedicated studies other than a couple which I decided to ignore as they were out of date and weren’t based on enough patients to be really valid in my view. At least it seems as if the main treatments for MM are effective for all forms of the disease even though all those with it seem to present with different symptoms, reactions to treatment and side effects. Like you, I told my husband as much as he needed to know in bite size pieces and made sure I timed them appropriately to diminish his anxiety – so, for instance, never before bedtime, never at weekends, or not when he was anxious about work but perhaps when we were at the hospital or when he could soon switch off onto something else. I think he was in denial for some months and it took many months before he wanted to engage with the consultant and really have the confidence to talk about it. My way of thinking is that if I know everything, including the worst possible scenarios and outcomes, then I can come to terms with that first and the cope with anything!

Kevin’s treatment was a little different from Carol’s and I think the protocol at the JR – there was no added chemo to help mobilise the stem cells but perhaps that was because he took cyclophosphamide in the initial induction therapy with dexamethasone and thalidomide. He had no real issues with the injections of the GCSF before the harvest -I had strong painkillers at the ready – just a slight throbbing in the sternum and the pelvis on a couple of nights, but not strong enough to merit paracetomol, at least you then know its working to stimulate stem cell growth and mobilisation. Interestingly when he had the same injections post SCT to stimulate the growth of new calls at neutropenia it was a bit more painful but he only had 6 paracetamol in total I think.

The actual harvest was straightforward and painfree – amazing to watch the cell separator at work – rather like a dialysis machine, and Kevin had two consecutive days of harvest taking about 2 and a half hours each. The worst thing is just having to sit pretty still for that time with cannulas in each arm but it is pretty incredible when you see the bags of cells, even more incredible when you get them back! The preservative in the machine can cause low calcium levels whilst you are hooked up – this is shown by having cramping or tingling in the fingers – Kevin had this slightly on both days but was given calcium tablets to chew which were effective.

Kevin didn’t have the amazing number of stem cells at harvest that Carol did, but still enough and I think  they harvested 4 bags of cells the first day and 3 bags the second day. The highly trained nurses were in constant attendance during the procedure and it was quite emotional ( in   a good way) when a  month later the nurse came to give them back, incredible technology!

I suppose one of the humorous things is the search for good veins for the cannula sites – how nurses must love patients with good veins – some of Kevin’s had collapsed with over use over the last year I think and it was quite amusing to watch the nurses push and prod until they seemed to strike gold and find a good one! Hospitals do things differently but I know found putting cannulas in the arm where possible is much more comfortable than in the back of the hand which was the failsafe option as they were less uncomfortable and didn’t restrict movement so much.

It is an incredible process and one that cancer centres so routinely now – one interesting point – the dates for the harvest have to be pretty rigid as the GCSF /Neupogen only works for a very limited time and even if left a day late the numbers of cells collected will decrease rapidly. Kevin’s injection dates fell over a bank holiday weekend at the beginning of May which meant district nurses visiting on three weekend days – that was fun – they hadn’t heard of it before and it took some time for them to be comfortable with mixing the drugs up and administering them but they were intrigued by the process too.

I hope this puts your mind at rest – it is a very safe process, just tedious I think and lots of injections to put up with.

Regards

Nicki

[Author]

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