[HelenParticipant]

Darlington? Do you have any plans to go any where else? You could have a trip to Richmond or Northallerton for lunch.
Helen

[bandityogaParticipant]

Staying at Rockliffe Hall, got a very good deal. Plan to visit Durham and Harogate

Maureen

[HelenParticipant]

Golf then! ….Hope you have a lovely break
Helen

[AliParticipant]

Hi,
So, its all confirmed. It IS a plasmacytoma. To be treated with 16 – 20 sessions of radiotherapy. Mums had bmb and waiting for result to see if Myeloma is active again. Should know some more on 19th. Mums pp levels are at 4 and all other bloods are ok. Mums also just had a full skeletal xray to see if any other damage.

We are hoping this is an isolated plasmacytoma and no need to start chemotherapy again quite just yet.

Can anyone explain what radiotherapy is like please….Andy, have you just had some or am I dreaming it?

Love Ali

[mhnevillParticipant]

Hi Ali

I don’t know what happens to the Site these days. I have just renewed my password for about the sixth time. I had an email saying your Mum was going to have radiotherapy, but the post isn’t here! Maybe you started a new thread.

Anyway, what I was going to say is, compared to everything else radiotherapy is an easier part!! The worst thing is all the waiting around and having to lie down and not move, and on a very narrow table. They say it makes you tired by the end, but I think it was the travelling that did it for me.

All best wishes to your Mum.

Mavis x

[HelenParticipant]

Hi Ali
If all bloods are all ok this is a good thing, means the bone marrow is functioning properly and saves starting on the treatment route just yet. The treatments have to be kept in reserve for as long as possible as individually we don’t know how quickly we will work our way through them all, but the plasmacytoma needs fixing so close review is the order of the day. It might settle down again… I have a friend with mm who developed a new lesion about a year ago, had the radiotherapy and is still progression free, so she is doing well and has had 21/2 years from her transplant so far. When is the first session?
Love Helen

[VickiParticipant]

Ali, hi, just caught up with this post! What a bugger I can’t believe this. Why can’t this mm just stay out of our lives, I’ve had one of those days when I’m having a downer on it…..Colin’s fine but I’m having a what if time. As regards your mum I don’t know what a plasmacytoma is….is that the same as when Colin had a fractured vertebrae at t12?

If so he had one big session of radiotherapy. It lasted about 4 minutes or so. Afterwards they said he might feel a bit sick, bit breathless and a bit tired. Which he did for a bit. I had to rub special cream into the area, a square on his back to stop it going like sun burn. It didn’t hurt or anything. Hope this helps.

I’m finding it really hard to look back at the moment…..sorry to hear your mum is in this situation Ali. 🙁 hope you and the family are ok?

Vicki and Colin x

[AliParticipant]

Hi everyone

I wanted to wait until we got more facts before posting again. So, after the MDT meeting today they have decided that although pps remain stable at 4, bloods are ok and no more Myeloma cells in bone marrow that more treatment (velcade) is to start. The theory behind this is that there must be some kind of Myeloma activity going on to cause the Plasmacytoma, and as Mum is fit and in otherwise good health they will hit it hard. This on top of the sessions of radiotherapy. Im abit confused about it to be honest, I expected Mum to be on a watch and wait situation.

Helen, girly question. Are you allowed to have your hair coloured whilst on velcade? Possibly foils that do not touch the scalp? Any hints or tips you could share about Velcade would be gratefully received. How are you doing? Have you started your new treatment yet?

Vicky, great to hear from you!. I did the same kind of thing as you, I checked in on everyone now and then but had no reason to start any discussions until now………..
Sounds like you had a lovely holiday, so exotic. I hope you were spoiled rotten. Good to hear Colin is doing ok, long may that continue. Sorry to hear you are on a downer, its understandable every now and then.

Thanks for the info on radiotherapy, I think we are all going to be busy re the hospital visits. Mum will know the schedule of events on Wednesday. Possibly travelling between 2 hospitals which will be a bit of a pain.

Hope everyone is enjoying this wonderful sunshine, Mum an I went for a lovely walk this afternoon (funny thing is that its me that’s a bit out of puff and she strides out like there is nothing wrong!) she puts me to shame.

Love Ali x

[stanley-1960Participant]

Hi, Ali,

Just got back from seeing my consultant today. Asked a load of questions about my plasmacytoma. He would not recommend radiotherapy at the same time as chemo. He was not concerned at present that it has been hanging off my rib for possibly up to 12 months.He said there would be no permanent degradation of the bone due to the prolonged duration. If the chemo does not remove it after SCT i will go on the 25 session 50GY route to finish it off. Hope the radiotherapy sorts mum out aligned with the Veclade.

Best regards,

Stanley

[HelenParticipant]

Hi Ali
It is just a year since I started Velcade, similar to your mum. I was ok, and fit, so they hit it hard. However, it is tough and I found it very painful for about half of each cycle, as the treatment went on the pain in my feet worsened so they halved the dose. I now have some residual ache in my feet but have had several painkiller free days recently, so it is improving.
Hair, well, you know me! I’ve had it coloured all the way through this time, even on the cyclophosphamide! It did get very thin though. I have that ‘dip dyed ‘ look where only the ends are really coloured and apparently it looks fine. I think ammonia free products are used. My hairdresser sprays hairspray to make my hair stand on end then paints it with a brush. I sit under plastic for an hour then they tone it, I blow dry it upside down and leave it shaggy looking, I don’t wash it as often as I used to as it is much harsher and drier hair than I had before, but I use lots of hair wax.
I’ve updated my treatment situation in my post.
Love Helen

[AliParticipant]

Hi Helen, thankyou for that. Mum asked me to ask you! She doesn’t post on here, but knows I do, she sometimes has a peek also. She says the hair thing seems trivial, but you need to know these things :-).

Happy birthday! Hope you have had a lovely day xx

Hi Stanley

When do you start your treatment? My mums plasmacytoma is a fairly new thing, she didn’t have it at Januarys xray.

Keep us informed of your progress.

Love Ali x

[Author]

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