[beetlejuice54321Participant]

Hi Kazza909

The symptoms you are describing are perfectly normal for a stem cell transplant. I had one just over 4 years ago and felt very ill for the first two weeks immediately after it. I had uncontrollably sickness and eventually had to have anti sickness drugs pumped directly into my bloodstream to stop the nausea.

But be reassured, I started to feel a lot better by about day 12 post transplant. I was then able to sit up and watch TV. Before then I was too unwell. Hopefully then your mum will be feeling a lot better in a weeks time.

Good luck.

[beetlejuice54321Participant]

Hello Steve

sorry to hear you about your diagnosis. I was encouraged to share my experiences with you to try and alleviate some stress from your life.

i was diagnosed with myeloma aged 33 four years ago. Like you I had a mgus amount of myeloma in my bone marrow but a very high para protein measure, because the myeloma had formed an extramedullary plasmacytoma (ie the myeloma had come out of the bone marrow, something it should not do, and if it does the doctors call it more aggressive disease, largely because if they can’t make it go away you do not  t live as long). An extramedullary plasmacytoma is a lump of bad cells, similar to other non blood cancers, and in my case was in my lymph nodes.

After two two cycles of dt-pace treatment and a stem cell transplant and now over 20 cycles of maintenance velcade, and radiotherapy on the lymph nodes I’m in complete remission and have been for 2.5 years. I still take chemo every two weeks to keep me safe.

Since I was diagnosed, I’ve gotten married and am now having my first baby. I feel very optimistic for my future and live my life as normally as I can. Because of the chemo, and thankfully for having an understanding employer, I work just short of a full time contract (not 100%) because of fatigue caused by chemo and hospital visits. I genuinely feel optimistic for my future and do jot let the myeloma affect how I plan my future.

You should also console yourself with the fact that not all mgus patients develop full myeloma and you can go on for years treatment free. The low quantity of myeloma in my bone marrow at diagnosis is one of the main reasons I feel optimistic, as the plasmacytoma is curable, even if the myeloma in the bone marrow probably isn’t, and the fact that there isn’t much in there makes me feel I can go on for a long time hopefully. Plus new treatments are being developed all the time.

i wish you the best of the luck for the future and I hope everything goes well for you.

[beetlejuice54321Participant]

Hi Sabs

very sorry to read that your fiancée has been diagnosed with myeloma. I just want to reassure you that whilst it is a very worrying time at initial diagnosis, there are those of us out there (like myself!) who have been living with the disease for a number of years, and whilst not complacent, I live with optimism for the future.

For summary, I was diagnosed aged 33 with an extramedullary plasmacytoma and 10% bone marrow infiltration. That was 4 years ago. My initial treatment plan was two cycles DT-PACE then an autologus stem cell transplant followed by 2 year maintenance. I achieved remission after one year of treatment and have been on maintenance now for for nearly 3 years. The treatment is tolerable and I receive it fortnightly. I generally feel okay and work and live a normal life.

Despite the diagnosis, I have got married, and am having a baby shortly. I am optimistic for the future and genuinely believe, with some luck, I can go on. There are ever more treatments, and the survival rate is improving all the time.

Good luck.

[beetlejuice54321Participant]

Hi Rachel

I think you would have to have a bone marrow biopsy to determine whether it is MGUS or not. If the biopsy comes back with less than 10% myeloma cells in it then your are diagnosed with MGUS.

The biopsy is unpleasant (I have had 6 over the years) but I always treated it as my way of fighting the disease as it often hurt a little bit.

Now for the positive news: I have been told by doctors that you can live for years treatment free with MGUS – you probably will be monitored for progression to myeloma, but in most cases I think people do not progress from the MGUS stage. So if you are diagnosed with MGUS do not fret. You could well be fine for years and years.

(just so you know, I was diagnosed aged 33 with an extramedullary plasmacytoma and MGUS level of myeloma in my bone marrow. Four years on I am fine and very optimistic for the future. I know it is scary at first but be confident that there are many of us out there who have done well and I’m sure you will too).

 

good luck.

[beetlejuice54321Participant]

Hi g4zz41983

when I was diagnosed back in June 2013 the doctors weren’t sure exactly what I had as the myeloma was in all my lymph nodes but barely in the bone marrow. A very rare presentation. I wasn’t given a staging for the disease but I was told if the stem cell transplant didn’t go well then I wouldn’t last long due to the nature of the plasmacytoma. Thankfully it did go well. The transplant itself is undoubtedly the hardest thing I’ve ever done and it made me feel terrible for the first two weeks (constant sickness, swollen throat) but after those two weeks had passed I began to feel better and better and was close to being back to normal (minus hair) at 6 weeks post transplant. It is do able and some people sail through it ok. Do not approach with fear as lots of us have done it and it is doable and once the first couple of weeks are over your wife will hopefully be ok. As she’s young (like I was) her body should recover more quickly. But be very careful and wary of infections. Your wife will need to wrapped up in cotton wool and avoid people with any sort of cold. I was very careful for period directly after transplant.

i have been on VD now for over 3 years and find it okay. I suffer a bit of fatigue around the time I have it but I only have it every fortnight now so most of the time I’m okay. The thalidomide got stopped because it caused problems. I have been fortunate in that the velcade hasn’t really affected me too much, some people suffer from nerve damage in their arms and legs. I get the occasional twinge but generally I’m fine. The dexomethosone does in my mind cause the fatigue and if you’re on VTD weekly it can be hard work feeling rough half the time.

Hopefully the treatment works for your wife and she gets through to remission. Then the doctors will reduce the doses and things will get easier.

 

good luck.

[beetlejuice54321Participant]

Hi greetje

i was diagnosed with a large plasmacytoma in about a dozen lymph nodes in my collar bone area and in my chest in 2013 (I was aged 33 at the time of diagnosis).

I was was treated with two cycles of DT-PACE, followed by a stem cell transplant. That got rid of 90% of the mass. I was then put on velcade, thalidomide ad dexomethosone and have been on it ever since. I also received radiotherapy on all of the lymph nodes. I am about to start cycle 25 but reached remission just over 2 years ago. Just letting you know there are options available for this very rare presentation of myeloma.

good luck with your treatment.

• This reply was modified 7 years, 10 months ago by  beetlejuice54321.

[beetlejuice54321Participant]

Hi georgieporgie

 

i think i was started on the VTD treatment between 4 and 8 weeks after the stem cell transplant. I can’t remember exactly when the treatment started. It was probably closer to 8 weeks than 4 weeks in hindsight as I had to have a PET scan to see the effect of the melphalan on the lymph nodes prior to the treatment starting. I started on the VTD treatment back in November 2013 and have been on it ever since. But as I said, I’m feeling good, back at work, even got married (after I got to remission) and am starting to think long term about things. So be positive and I hope things go well for your dad.

Take care

doug.

 

 

 

 

 

 

[beetlejuice54321Participant]

Hi

I just want to say that I was diagnosed with myeloma in my lymph nodes almost 3 years ago, alongside a tiny amount in my bone marrow (less than 10%). I was treated (and am still treated) at the royal marsden in Sutton. When I met professor Morgan he said that the presentation of myeloma in lymph nodes is very rare. However, when combined with very little myeloma in the bone marrow it is curable (or at the very least, you will have a long remission if things go well). I was 33 at the time so hearing that cheered me up a lot.

 

i was treated as a conventional patient would be, so had two cycles of DT-PACE followed by high dose stem cell transplant. That took out 90% of the tumour (it was in about a dozen lymph nodes and formed quite a large mass over my chest). I then started weekly VDT (velcade dexamethosone thalidomide) treatment and have been on it ever since (now onto cycle 18). I got to remission after 18 months treatment and a bout of radiotherapy on all the affected lymph nodes that finaly pushed me into remission. I remain on velcade and Dex as maintenance and apart from some sleep deprivation caused by Dex and the associated fatigue a couple of days later I’m generally feeling fine and work full time (almost)!

I hope your treatment goes well for you and I wish you the very best of luck.

 

Take care

doug.

[beetlejuice54321Participant]

Hi val

I’ve suffered from a very rare extramedullary presentation of a plasmacytoma in my lymph nodes. They are basically a build up of myeloma cells outside of the bone marrow. There are lots of treatments for them, but the best option in my experience is high dose melphalan as part of a stem cell transplant. If the plasmacytoma is localised it might be able to be removed by surgery. Radiotherapy can also be curative for these types of tumours. You need to get clarification from your doctors the exact nature of the problem so it can be treated.

 

good luck.

[beetlejuice54321Participant]

Hi maureen

i had a sct in October 2013 with my para protein level at about 25, and the bone marrow at 5%. However I am an unusual case as the myeloma had collected in my lymph nodes rather than the bone marrow and I was told that the sct was the only chance I had of survival, as when the myeloma is outside the bone marrow it acts much more quickly to bring the end sooner.

Given i I am typing here today the sct worked very well, not completely, but got me 90% of the way to remission, which was finally achieved a full year later (after vtd treatment).

So so you can have sct outside of the normal ranges, but I guess it depends on the case.

Good luck.

 

[beetlejuice54321Participant]

Hi Amanda

it is the common treatment procedure to try and put the myeloma as close to remission with the initial drugs and then have the sct to try and put the myeloma into remission. Hopefully the sct does achieve that and the remission is a long one.

What JaneElliot says is true. There are lots of other drugs available to treat myeloma for which the side effects are not (necessarily) as severe as the sct. Although you should be aware, that although the side effects of the sct will probably make you feel very unwell for 2 weeks, and weak for a further month after that, you will recover and return to normal after 3 to 6 months. I was feeling close to normality after mine after 2 months. If you go with the drugs instead, the side effects of them will be with you permanently while you take them, and often with myeloma you are continually on drugs to keep it under control. If you go with the sct you might be able to go drug free. Again this is worth discussing with you consultant. It’s also worth noting that taking the sct option over alternative treatment is that it buys you more time, and leaves all the other drugs available for use in the future. The problems arise when you run out of treatment drugs.

just for context, I was 34 when I had my sct in October 2013. I was at home for 5 days initially, being sick on and off all day, and then an inpatient for 7 days and generally felt awful that whole time, constant sickness the issue, and then mucousitis of the mouth ( basically sores in throat so swollowing or eating is painful. Then there’s the diahorrhea). But it all passed after 2 weeks. After that I had little or no appetite for a further month. But then I started feeling better. Without a doubt the sct saved my life (I am an unusual myeloma patient in the sense that the myeloma hasn’t collected in my bone marrow but in my lymph nodes). I would do it again if I have to, although I hope I never have to.

good luck with whatever decision you take.

• This reply was modified 9 years, 10 months ago by  beetlejuice54321.
• This reply was modified 9 years, 10 months ago by  beetlejuice54321.

[beetlejuice54321Participant]

 

Hi Majic30

 

I just wanted to post because I have experienced DT-PACE (and Stem cell transplant which came after). I should stress I am an unsual myeloma case (and if you’re a regular at the Royal Marsden Myeloma Clinic I’m the very obvious outlier in the clinic as I look (and probably am) about 30 years younger than everyone else) so my experiences might not be directly transferable to your husband.

 

DT-PACE was my first ever treatment and I had two cycles, July and August 2013. It is a combination of 6 drugs (D=dexomethosone, T=thalidomide, P=Cisplatin, A=Doxorubicin, C=Cyclophosphimide,E=Etoposide). The first two drugs are taken as pills, the other four drugs are taken continuously over 96 hours (without a break) through a line (so IV delivered). So you are sleeping, walking, eating, showering, whilst connected to the drugs – for a full 96 hours. This is the bit to get your head around. You will also take aciclovir, flucanconile, anti-sickness drugs, another drug for your stomach lining (which I’ve since forgotten), but I was taking something like 26 pills every morning for those 4 days I was on DT-PACE.

 

In terms of tolerating the drugs. It’s important to know that I was only 33 when I was given DT-PACE. So I tolerated it quite well. There was only one day on each cycle that I was physically sick, and apart from some mild fatigue during the process and immediately after it, I was fine. Because I was young, my bone marrow function is still good, and hence my neutrophills bounced back very quickly so I didn’t have to come back into hospital once I had finished the 4 days. However, I think I was allowed home as I live close to the hospital I was treated. If you live some distance from the hospital you may have to stay in the whole time (4 days for treatment, plus additional time for body recovery). Whilst I was an impatient at the Marsden, another chap, 20 years my senior, was undergoing DT-PACE and he live 2.5 hour drive from hospital so he stayed in for nearly 3 weeks. He didn’t tolerate the drugs so well. But then everyone is different. But be ready to lose all your hair.

Was DT-PACE successful for me? Well I was told it was by my consultant. It halved my PP count, but regardless of the outcome I was always going on to SCT as that was the only thing that was going to save me due to my unusual presentation. It did start me on the road to full remission, but that did take me 16 months to get to that point!

Good luck for the future which ever decision you take.

[beetlejuice54321Participant]

Hi Mel

I know that the bone marrow biopsy comes with bad reputation, but you shouldn’t fear it as the fear if it is much worse than the actual procedure. I say this as a veteran of the procedure (I have had 6 in the last 16 months). Having gas and air really helps calm the mind and once the local anaesthetic goes in you will only really feel the pressure as they push, t it doesn’t really hurt. You will be fine, seriously. I’m hoping to go through another 6 because that means I will be here for a long time. Good luck.

 

 

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