[cupcake70Participant]

Hi , My name is Mandy .I am a 44 yr old mum of one from Essex. I was diagnosed with Multiple Mylemona in March this year after a routine blood test showed raised protein levels,referred to specialist at Queens Hospital in Romford,Essex who confirmed MM and have lesions on hips,upper arms/shoulder area and skull. Started treatment almost immediately and have had 5 rounds of chemo and am now at the beginning of the process for Auto stem cell transplant now ,due to have it done at Barts in London.  Going in Friday for Cyclophosphamide infusion then gcsf injections for 8 days ( being brave doing them myself !!),harvest happens 20th and then get admitted ,have Melphalan Chemo and set to have sct on 30th.

To say I am scared is an understatement and feel I cannot let me hubbie or daughter or family truly know just how scared I am. Everyone has told me I have been so strong through it all,but trust me like many of us I have had bad days when all the horrible thoughts about the whole situation come into my head and I have a good cry to myself. I have been quite lucky with side effects and have only had two colds since being diagnosed and fortunately didn’t have any need for hospital admission, only had one incident of high temp where had to go A+E but came home same day.

My worry now is the I am due to go to Barts on Friday this week cyclo chemo as I mentioned earlier and I have developed a bit of a funny throat,only way to describe it is like gunk/flem (sorry peps only word could think of!) at the very back of it and worried if it is strep throat or tonsillitis that sct will be delayed,not sure I could keep it together so much if it gets delayed :(.

Has anyone else had sct delayed due to illness and if so how did you deal with it?

Sorry to ramble so much,this is my first time on any sort of forum.

 

 

[wallaceParticipant]

Have you contacted the hospital about your throat? I am 49, 7 years post SCT and if I feel a cold starting to take hold I get on to the Dr or hospital for treatment, the head consultant at St.Hellier told me to do this in order to prevent a cold progressing to pneumonia which I might not recover from.
You are not alone with being scared, I was and still have days where I worry. The harvest is fairly uneventful just tedious trying to lay still for so long and I was lucky enough to get most of it done in one day. The nasty bit for me was the effects from the Melphalan. I was told it would knock me for six like the previous chemo which I found was a walk in the park so thought they were just being cautious, but it really did knock me for six AND into the middle of next week!
I had very bad mucositis to the point where a morphine drip was administered for the pain. After 21 days in the Royal Marsden I was discharged with little to no energy and poor appetite, just taking a shower would leave me needing help to dry off and dress then I would need to rest for a couple of hours to recover. My energy and appetite returned slowly over the following weeks and within a couple of months I was feeling quite well. I had cinical depression too which was difficult to cope with but wore off eventually. Looking back I would say that had I been able to discuss some of my fears pre SCT with someone who had been through the same I would have coped better.

Mike

[mickackParticipant]

Hi

Ime post 6 month sct and have just done a sponsored walk up the lakes raising 1.147.29p for bright red our local blood cancer charity (Newcastle)…yes the treatment does make you tired no energy etc but you will get through it and day by day you will get more energy until after a couple of month you will feel ok again…I understand that we are all different and the effects can vary but trust your consultant as they will tell you exactly what will happen and how you will feel…let your family in believe me they are all going through it with you in their own way anyway so if you all totally understand what’s going to happen then you can all go through it together. My 2 weeks in hospital were long and some days I didn’t allow my family in to visit because I was to lethargic. ..They will understand if you tell everyone that there will be days like that…like all of us with mm we have to put our faith in the fantastic staff in the wards who will look after you believe me they are angels and I will never forget the care…well I won’t forget because it’s life changing (understatement).

We are all hear for you and know what your going through…ime 48 last month and was very poorly this time last year on diagnosis but I got through it and so will you…We have no choice have we 🙂 but keep fighting and keep positive

Mick

 

[cupcake70Participant]

Hi Mike

Thanks for the reply,have to report to day unit tomorrow as staying in their hostel next to hospital as live a fair distance from it and have to be there early morning.I haven’t spoken to anyone about the throat,i am drinking plenty of fluids and taking throat lozengers and hoping it will do the trick but I am going to mention it tomorrow when I get to the unit,temp is not up so I guess that’s a good sign. As far as the sct goes,i am prepared for the side effects as much as I can be but the one thing I am more scared of is being away from family,havent been apart for this long (potentially 3-4 weeks) from them ever. I have heard only good things about barts and so far the nurse specialist and consultant I have meet have been nothing but helpful and pleasant to talk to and prepared to explain everything and not judgmental or dismissive even when I ask what I think are “stupid/silly” questions.

Like hubbie keeps on saying ,”worst bits almost over … then you can take over the housework again!!” , 🙂 he’s been my rock.

It inspires me that so many people are post sct 5,7 and even 10 years and doing well, I plan to be one of those people to 🙂

[mhnevillParticipant]

Hi Cupcake

I’m sure you will be one of those who does well. Being young seems to help.

All very best wishes.

Mavis x

[cupcake70Participant]

Hi Mavis,

Thanks for the kind words,its nice to know there are others that understand the journey we all take with this. Feeling more positive this morning,crossing my fingers that everything can go ahead as planned .Thanks again

Mandy x

[Kazzam2Participant]

Hi Cupcake70,

Firstly hello and welcome, I do not get on here as much as I would like but it is great and a friendly and very helpful site, quite unique to us!
when I read your post and concerns it took me right back, I am post sct approx 22 month, not all plain sailing but well worth it. Like Wallace I found the Melphalan awful. but since early last year I have been in complete remission, I still have morphine for bone pain and (now) 3 monthly zometta infusions, but I gained weight and got my appetite back. My life has changed, but once you get over the shock of the diagnosis, you have to accept a new ‘normal’. As for your throat, if it is infection, I am pretty sure they would pick it up prior to proceedings. Have you had high temperature?

I wish you well.
Regards
Karen x

[rebeccaRParticipant]

Hi cupcake I had a very bad throat develop just before the harvesting process and they checked the throat the day of the cyc infusion – I was totally convinced it wouldn’t go ahead but they proceeded and it was all ok. When you complete your harvest – which is a walk in the park – it will give you a huge psychological boost in preparation for SCT. I was terrified of SCT – which is normal- the day I got my call to say a bed was available I was as excited as if I was going on holiday abroad believing it to be the end of worrying about it. Everyone is different, but regardless, SCT is horrible but doable. At your age you will recover quickly ( unless you get infections) and in 6 months I was totally back to normal fitness/life etc – but do not underestimate the recovery process. I could have gone back to work after 3 months as I was fit then but chose to have 6 months off and concentrate on my fitness levels but, more to the point, to start enjoying life. I believe had I gone back in 3 months I would have been too tired to exercise/enjoy myself and would have got dragged down by the whole process and become more depressed. Post SCT is strange as you haven’t won the race, as this race is endless, so it’s hard to put it all behind you and somehow it suddenly dawns on you that this truly is a marathon not a sprint – so you still need to discipline yourself mentally to “not to go there” and to stay in the sunlight and out of the shadows. My biggest advice would be to start planning lots of treats after SCT is over and be very kind to yourself and take time out for you/family as this can be quite a fragile time – don’t rush to get bogged down in some of lifes drudgery. I was very strong throughout chemo but SCT mentally “broke” me and it has taken many months to regain my mental strength.

Hi Mike – I find it interesting that you report a cold for action to try and avoid pneumonia – this is my first winter post SCT and, with a gfr of 25 – 27, now am very worried about the risk of pneumonia wiping out my kidneys/me. What do they give you for a cold as I thought it wasn’t treatable or do they give you antibiotics as a precaution (tho these are not kidney friendly)? Do you have a pneumonia jab? Think I need to ask some questions at my next consult (tho think he sighs and settle into his chair when I walk in asking about everything!)

Rebecca

[tonyfParticipant]

Best of luck cupcake, you can do it? It’s all very scary, really right from the moment you are told that you have myeloma, you just don’t know what to expect.
Parts of the SCT process are unpleasant, for me the worst part was living in isolation for three weeks, but you know it soon passes. I followed Karen into the transplant ward, now I am 21 months post SCT, i take no maintenance drugs, just one adcal a day and once every three months I have a calcium infusion. We’ve travelled abroad and try to live life to the full.
Enough of me, again wish you all the very best, you will soon be doing the housework!
Regards
Tony F

[Nanna59Participant]

Hi Mandy

Tony is right, you can do it even though no one is saying it’s easy. I am one year post transplant and trying to lead a ‘normal’ life again.

Try to stay positive, things do get easier as time goes on

God bless
Chris

[cupcake70Participant]

Hi Karen,

In the end throat seemed sort itself out and the iv cxclophosmide went ahead as planned,next step harvest in just over weeks time,have the joys of the gcsf injections to look forward after today,touch wood all going to plan so far. Glad to hear your well,long may it continue. Hope to speak to you again soon.

Take care
Mandy x

[cupcake70Participant]

Hi Rebecca

The cyclo infusion went ahead as planned,thank god.All Seems to be going ok at moment and harvest is due to go ahead about a week from now.I am so glad I joined the forum,such nice and people and very encouraging words.My family have been brilliant but its just so nice to speak to people the have gone/ or aregoing through this journey.Definately making plans for once its all over and hope to be able to go on a nice hol with hubbie next summer.

Keep well,take care.

Mandy x

[cupcake70Participant]

Hi Tony ,

It’s been a good start,first part of the sct process out of the way yesterday,like yourself not looking forward to long stay in isolation but I plan to take things in to occupy myself.Family and friends have threatened to visit me if they can while i’m there!:)

Regards
Mandy x

[cupcake70Participant]

Hi Chris,

With all these kind words and encouragement how can I not stay positive,i have a feeling i’ll be ok and hubbie wants to take me away next summer for our wedding anniversary so I have to get through it and stay well :).

Take care
Mandy x

[iangParticipant]

Hi Mandy

I was in the day unit on Friday too. I’m 41 days post transplant (day T+41), so I’m not all that far ahead of you.

I was diagnosed in mid October last year (that’s when I was told the bone marrow sample confirmed it was myeloma). After 4 cycles of CTDa and 4 cycles of Vel/Dex I had my transplant in early September.

The harvesting was a bit tedious. My wife came with me (she’s been brilliant) so I had someone to talk to, though one of the nurses also stayed with me most of the time, monitoring the machine. You are connected to the machine for hours so they draw the curtains for you to perform the inevitable calls of nature. After the harvesting is stopped you have to wait while the stem cells are couriered to the Royal London (if I recall correctly) to be counted, and wait to hear if enough cells have been harvested. Because of my age (69) the nurse chose to only harvest enough stem cells for one transplant, which only took one day, but it was a long day. In your case they will presumably aim to harvest enough for two transplants.

In the ward:

The day after admission I had a dual PICC line inserted and I was given the high dose Melphalan along with lengthy hydration infusions. Anti sickness meds were started. A couple of days later my stem cells were returned. This was done by one of the specialist care nurses. After thawing them – they arrived in liquid nitrogen – she pumped them in manually rather than using a gravity or pump infusion, she said this was to make sure that as many cells were returned as possible.

I was told the melphalan would affect the lining of my whole gastro-intestinal tract. I would get painful mucositis in my mouth, I would get diarrhoea, I might lose my appetite and I might get nausea and/or be sick. But I didn’t get any of these. I guess I was lucky. I religiously brushed my teeth (using an Oral B electric toothbrush) after each meal and before going to bed, followed by Caphosol mouthwash after each brushing. This may partly explain the absence of mucositis. The Caphosol information says it helps prevent and treat mucositis. Initially I was given a bottle of saline to use as a mouthwash, then I was given two packs of Caphosol on transplant day. I was also given Difflam oral rinse, which I used after waiting a suitable time (at least 15 minutes) to allow the Caphosol to work. Incidentally, I use Sensodyne Pronamel toothpaste, one of the few toothpastes available that do not contain SLS (sodium lauryl sulfate). I used to suffer from bouts of mouth ulcers before I switched to Pronamel (after reading about SLS), now I don’t. Avoiding SLS seems to be controversial, but using an SLS free toothpaste seems to benefit me.

After settling down, life consisted of getting through each day, which was mainly tedious. Each bed had a Freeview TV, which was free (unlike some hospitals that charge). Freeview has radio channels as well as TV channels. You could buy newspapers, snacks, sweets, drinks, etc from a couple of trolleys that were brought round daily by volunteers that run the hospital shop. I had a cellular iPad which I found invaluable (I haven’t got a smartphone). The 3G signal is good in the ward and in the day unit, but the local cell gets very busy around lunch time causing internet browsing to grind to a halt. One tip, if you take any chargers (phone, iPad and toothbrush in my case) I suggest you take a short mains extension lead too, e.g. a 1m or 2m 4 way extension, because the mains sockets are quite high up the wall – about shoulder height. You may also need a 2 pin adapter (if a charger has a 2 pin shaver-type plug).

Another tip. You need to keep your PICC line dry. Mine was inserted through the side of my right bicep (they put it in the arm you use most and I am right handed). The nurse who inserted it suggested a Bathguard waterproof sleeve. I looked online for devices to keep it dry and I liked the look of the LimbO elbow protector. My wife ordered a large one (M75) for me and it worked very well indeed on my arm, but anyone with even moderately large arm muscles will probably need to get one made to measure. It has wet suit-like material at each end with different size holes that your arm passes through. The smaller hole was quite tight on my forearm when the LimbO was high enough up my arm to cover the PICC area. It was good being able to shower without worrying about getting the PICC line wet.

I tried to keep myself active as much as possible. I also avoided lying on the bed for long periods during the day. I was in an open ward initially and I was able to stride up and down the central aisle. This may not be an option now, the ward was due to move shortly after I was discharged and I gather the new ward only has side rooms. Later I was put into a side room and I was limited to walking around the bed. But there were many benefits of being in a side room – own washroom, no lights out (about 10pm in the open ward), no disturbance from other TVs or worry about your TV disturbing others, etc.
 
I used a reporter’s notebook to keep a log/diary of my stay. Besides giving me something else to do I found it quite handy to be able to refer back to when things had happened. The nurses were happy to give me printouts of my blood test results, but if you prefer you could just keep track of the main ones (Hb, WBC, Plates, Neuts, and possibly creatinine) in your log.

Most of the other patients in the ward seemed to have leukaemia. I was aware of just one other myeloma patient.

Last but not least the nurses and doctors were all very pleasant, friendly and helpful.

How my bloods progressed:

My neutrophils collapsed on day T+6 and started recovering on day T+12 with the help of Zarzio. My platelets dropped steadily from day T+0 to next to nothing on day T+9 and recovered from about day T+20 onwards. You are discharged when your neutrophils are consistently above 0.5 and you feel ok. I was discharged on day T+17. I was neutropenic (neuts below 1.0) for some time after discharge but without daily blood tests I can’t say exactly how long.

Transport:

I’m not sure I could have carried bags for any distance when I was discharged, so my wife and stepson drove in to collect me. There’s no parking at Barts, but there is an underground City of London car park nearby. The charge is £2/hour which isn’t bad for a few hours and I was discharged on a Sunday so there was no congestion charge. When travelling in to the day unit we park at a Central Line car park and take the tube to St Pauls. My wife also did this when she travelled in to visit me. It’s far cheaper than travelling in by train (which we did once and it cost a small fortune). We got Oyster cards to reduce the tube fares. You can now (since Oct 1st) use a contactless credit or debit card instead of an Oyster card, the fares are the same, just make sure you use the same card on exit.

I’ve crammed a lot into this post, I hope I haven’t overdone it and I hope it’s not too disjointed. Anyway, this was my experience. I hope it gives you some idea of what to expect. Good luck.

Ian

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