[AliParticipant]

Hi Helen

That really is a lovely picture. My Mum has the same problem!, she looks really well and you would never guess her diagnosis. Did you have a lovely birthday?

Love Ali x

[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

[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

[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

[AliParticipant]

Oh Helen
I’m so sorry to hear your news. I cannot believe it and don’t quite know what to say. The medics will have a concoction lined up for you know doubt. Did you feel like you were relapsing? Or was it an unpleasant suprise?

Just look forward to your daughters wedding. Whats the date?

Sending you a big hug 🙂

Love Ali x

[AliParticipant]

Hi Sarah, thankyou for that. Your poor hubby, sounds awful :-(. How is he doing now?

Hey Helen, no, not heard a thing. Nothing has been done at all, no further investigation, no xrays. Probably to do with the bank holiday. She goes to see haematology consultant on Thursday so we should find out then what has been tarranged.Could I borrow some of your bluntness? Could do with just a tad! I think its a natural occurance, the older one gets you are allowed to say what y,
Ou think,its the law hehe.

Right, better get up and at it,

Love Ali x

[AliParticipant]

Hi Mavis,

Thankyou for your reply. Did you have the plasmacytoma before or after your MM diagnosis? Did you have to have radiotherapy after surgery?

Mum is still waiting for
further investigations, its frustrating that the medics don’t consider it as urgent as we do, and the
bank holiday weekend doesn’t help! Still, mums got a stinking cold and I don’t suppose they will want to be doing biopsies until she is clear.

Yes Mavis, keep an eye on your readings, take care x

Hope everyone has an eggstraspecial Easter weekend.

[AliParticipant]

Hi Helen, no, you weren’t too blunt! I always take your comments on board, and value your opinion. Just hope it doesn’t take long to sort a biopsy out. I hate the waiting game 🙁

Retirement! Good for you! You will not know how you found the time to go to work. I bet there is a market for your knitwear, family orders will keep you busy for a while.

Love Ali xx

[AliParticipant]

Hi Eve
Thanks for your reply, Mum reminded me she had an xray in January and no sign of this mass?! Then. Been told that bloods were fine all the time. We don’t ask about pps ss we got abit obsessed. I will remain positive as I

,
ts the only way to be. In hopes I can shove the Myeloma back in its box!

Stanley, read up all you can, know your enemy. Your family will be sad and worried for sure, but I am sure you won’t be a burden to them. Let them help you.

I’m doing this on my fone and its proving tricky!

Will catch up in the week

Love Ali x

[AliParticipant]

Hi Stanley, nice to meet you:-) better under different circumstances, but here we are! Good lu
ck with your treatment. Please keep us informed. Did it start yesterday?

Hi Helen, thanks for your reply. Mums to have full body xray, its been 2 years sinc e the last one. Her consultant is on annual leave, which is typical. This was an incidental finding, they did a ct.scan to try and find out what was causing the infection ( they thought it was appenicitis, and was nearly down to theater) just as my rollercoaster had eased off abit!

How are you doing? Back to work? Ooo and how’s the wedding plans going?

Love Ali x

[AliParticipant]

Hi Helen

Great to see you on here and even greater to hear that Velcade has been worth it for you.

Budget setting for your daughters wedding hehe, good luck with that one!

Have a lovely trip to Madeira, my in laws went last year and really enjoyed it.

Love Ali x

[AliParticipant]

Dear Vicki

Yes get with it! Tom and Andy and Eve are on!

Mum is good thanks, tiredness is an issue for her too. Some days worse than others and seemingly no rhyme or reason to it. Also, mysterious pains that come and then go again just as quickly….we try not to read anything into it

When Mum goes away she does take the thermometer with her, and gets emergency antibiotics from the consultant/gp. She also uses a Vicks spray that she inhales before flying/being with crowds to ward off colds. So I don’t feel you are being paranoid! Just practical.

Hope you have a wonderful holiday – you both deserve it!

Love Ali x

[AliParticipant]

Hi all,

I must agree, the treatment my Mum has had from the NHS has been great and I for one cannot thank them enough 🙂 I Wish you both all the best on your husbands journey.

Sorry to butt in on this post, just want to say hi to Vicki and Colin. Im sorry I have not been in touch for a while, had trouble logging in to the new site, but I have been reading and catching up with everyone. I see you have booked a holiday……about time! How are you both doing? Are you on facebook Vicki? I can keep up with Tom on there.

Love Ali x

[AliParticipant]

I am so sad to hear of Dai's passing.

He was an inspiration to all. I looked forward to reading his posts on here. He replied to my first post when Mum was diagnosed, he was very knowledgeable.

My thoughts are with his family. They must be so proud of him.

[AliParticipant]

Hi Clare

We had the same feelings following my mums sct august 2012. We just expected the pp's to be zero and we were terribly disappointed when they were 2. However, I spoke to Maggie the nurse on here who explained not everybody gets to zero pp. The melphalan keeps working for months after, so they can still fall. Also, although everyone would like a zero reading, what the medics are looking for is the stability of that number, whether it is 2 or 6 for example, its for that figure to remain stable. We now do not ask for the pp levels. I think its too easy to be fixated. The consultant will advise Mum should there be a rise and need for concern.

Tell your Mum she's doing really well:-)

Love Ali x

[Author]

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