[foxy555Participant]

Hi Vicki

Thanks for your reply. It is all so confusing, is'nt it??, all these names. As usual we did'nt ask all that we wanted to, but I think it all goes a bit of a blur, the minute you walk into the consulting room. All they said about Pete's blood was that it was good, but they had'nt got the light chain blood results back yet!!!

You don't need to reply tonight Vicki, but how was the radiotherapy for Colin?? Did he suffer from hair loss? I thought it was only from Chemo treatment, but Pete thinks differently. Pete's course is for 5 days. Any advice would be welcome.

Have a good evening.

Love Ann

xx

[VickiParticipant]

Hi Ann and Peter,

Hope all going well. Re the radiotherapy. Colin did not lose any hair.his was a one off big dose.we don't know what a big dose actually meant but he had just the one session. As I said they gave him medication for potential sickness/upset tum. Colin said that he felt sick but not enough to have tablets. I recall we were told that the radiation carries on working so there was little effect for a few days, however I did read and Colin felt a delayed breathlessness and lethargy about a week after that lasted for nearly a fortnight. I remember also reading this on the Macmillan website advice re radiotherapy. It did say that it can make you feel very tired. I would recommend the Macmillan site for information too as it even goes into detail about suggested food to give people who are undergoing chemotherapy.

Also with regard to radio we had to rub cream into the area it was directed at I think to stop skin drying out and breaking and/or redness. That was no problem. We did not know what they meant about tatooes. Colin has these brown marks on his back where the radio went in and two little marks where it came out!.otherwise no other signs. I do remember he had a pain in his rib and while after. We did not know what that was but a friend who had radiotherapy following breast cancer said it could have been an exit point that sometimes causes discomfort?

I felt very apprehensive as it was our first visit to the oncology centre and felt very tense (Colin was apprehensive but again we were on adrenalin as we went direct from the consultants appointment to the radiotherapy )so it was a roller coaster. The radiotherapy did help with the back pain too. Again our consultant radiologist was very reassuring and kind.

To be honest it seems like a lifetime ago and it was only October.

Colin went to work today but feels a bit under the weather and tired again tonight! He seems to go up and down like a yo yo at then end of his cycle,which I assume is to do with the medication effect at the end of the cycle. It's his last day of cycle 7 with consultant on 7th June.

[jmsmythParticipant]

Hi Vicki

I found your post recradio therapy very infotmative. My hubby Frank, after smouldering for neary 6 years is starting CDT tomorrow for 6 cycles. I am so scared! They also found 2 lesions on the ribs and has appointment for radio therapy consultant next Wednesday but consultant says he would only need 2 blasts max. Frank has very sensitive skin do will stock up on cream. Don't know the affects of radio therapy but glad Colin had no hair loss and that it relievd his pain. Hope it does sae to Frank.

My best wishes to you boyhood
Jean x

[DaiCroParticipant]

Hi Ann & Peter,

Myeloma 101 – Nutshells – I suggest you look for a more detailed explanation elsewhere on the main site.

There are two main types of Myeloma… Heavy Chain & Light Chain.

Heavy chain Myeloma is measured by Paraproteins.

Light Chain Myeloma (Officially Bence Jones Myeloma) is measured by Kappa Light Chains.

Light chains have bigger numbers … as a rough and most likely inaccurate example – don't get frightened if one person with heavy chain myeloma talks about having a Paraprotein reading of 38 and a Bence Jones Myeloma patient talks about a reading of 540… both are high readings but as a starting point they might be about the same. I started my Bence Jones Myeloma adventure with a reading of 3,500… I was in a very poor state… but I was down to 0 after 3 cycles and in complete remission (CR) after 4 cycles.

I was diagnosed with Secondary Bone Cancer – Primary Unknown in April 08 and stayed with that diagnosis until I escaped from my beloved Wales on May 30th 09 and sought out treatment at Nottingham where I was correctly diagnosed with MM on June 20th 09. I received a first class explanation of Bence Jones Myeloma and started my frontline CTD treatment on July 2nd 09.

The only good thing to happen to me while still in Wales is the 6 days of Radiotherapy I received to zap a tumour that had crushed a vertebrae onto my spine and was touching my spinal cord… my back spasms were of such intensity that I literally left deep tooth marks on a Harry Potter hard cover. But after the 6 high dose zaps I was walking for the first time in 3 weeks and walking freely for the first time in 6 months.. 6 months of agony and hell.

So I hope that the radiotherapy has the same effect for Peter. The sudden freedom from pain and the ability to walk unaided (albeit an inch or so shorter) was unbelievably wonderful… let's hope Peter feels the same way.:-)

Dai.

[VickiParticipant]

Hi Jean,

Glad u found the post useful. From memory they gave us some special cream to rub in, so that should help. Radio therapy just sounded scary. The radiographers etc are lovely people and that helped so much. I was so stressed that I was trying to tell the consultant as much information as I could, she must have thought I was a babbling idiot, but I'm sure she's seen it all before. It definitely helped him with his back. It was the breathlessness and tiredness that concerned him at first…..that was before the current treatment cycles started!!! And it does pass.

Good luck and glad to have been of help,

Vicki x

[VickiParticipant]

Hello Dai

I have read a number of your posts and you seem so well informed. Colins consultant mentioned that he seemed to secret more light chains than pps. He started at 31000 light chains, with pp of 17. 31000 seems a massively high number when you talk about 540 as a high starting point……I do wonder how col could get to that figure with only one bone lesion And thank goodness for that! I've tried to understand the kappa lambda ratios, but I can't get my head around it, it's seems to be something to do with the balance between the two is in a range of 0.76 to 2 point something. If Colin is now at 1300 light chains and 1.2 pp, is it possible to work out from that how close he is to a 'normal ratio'.

Also I feel a bit confused about the difference in numbers. Although our consultant said it was a high figure, did not seem frantic about it and has been pleased with progress. He has just completed his 7th cycle. I do worry that others seem to have responded quicker than Colin and worry about that too. Your posts are very informative, thanks 🙂

Vicki

[jmsmythParticipant]

Thanks for your reply Vicki. We were at hospital today and told all about CDT. The side affects scared the life uut of me. Have to pick up the medication tomorrow and start this journey. Then radio therapy consultant on Wednesday. Didn't realise that it is up to that consultant as to wether Frank gets te radio therapy. I just want the pain to go. Thanks agai Vicki, hope Colin is feeling a bit better 😀
Jean x

[foxy555Participant]

Hi Vicki and Colin

Thanks for your post, sorry to hear Colin was not feeling too well! I do hope that he is feeling abit brighter!!

Your info was great, really helps. As I said previously, you are in abit of a daze when you are with the consultant and don't always ask the questions that you intended too!

Pete went for his radiotherapy assessment on Wednesday and only has to have one blast of radiotherapy (good news, we were originally told on Tuesday that it would be 5). Still has'nt got the appointment through, but I should imagine that it will be next week. So excited that, hopefully, that Pete will get some release from this pain after nearly 6 months!!

If we don't speak before the 7th, best of luck.

Did you read Dai's post? so pleased for him.

Take care both of you.

Ann and Pete

x

[foxy555Participant]

Hi Vicki

How did Colin get on today with the consultant?

Love Ann
x

[foxy555Participant]

Hello everyone

Just a quick one! Has anyone experienced loss of taste buds with CDT. Pete literally cannot taste anything! We have read the leaflets accompanying the tablets but cannot seem to find anything relating to it.

Thanks and best wishes to you all

Ann
x

[jmsmythParticipant]

Hi Ann

My husband has just finished 1st week of CDT and he is saying that things taste different. The worse thing to him is the Water- and you know he has to drink a lot. Have bought bottled water to see if it made a difference. He says it doesn't taste as bad. Hope things improve

Love Jean x

[tomParticipant]

Hi Ann and Peter

Yes I lost it but it comes back after treatment has stoped 🙂

Tom "Onwards and Upwards" xxx

[VickiParticipant]

Hi Ann and all,

Colin did not got to the consultant yesterday……he's been in hospital:-(

What happened was, last Friday (1st) he started to feel a bit unwell. Mind you he'd not really been right for a week. We had some friends over for a jubilee meal and he was not great all through. Saturday the temperature was going up and down and he was wall to wall sleeping. I just knew something was up. By Sunday morning temperature right up. So off to hospital and there he stayed with a chest infection until Wednesday lunchtime. Miserable bank holiday for both of us. His treatment has been delayed for what is likely to be at least a week and on a boatload of antibiotics. We will see the consultant on 14th now. This mm is such a roller coaster and I know Col feels quite low as he is beginning to wonder whether he will ever feel fit again. As for me I'm just shattered.

I hope you and Peter are doing well. Re the taste buds yes Colin has had ups and downs with that; tea is on and off the agenda, same with vegetables, mostly off alcohol (even a glass of wine), most unusual!. He seems to really be enjoying ribena and milkshake at the moment. And is really loving sweet things, which again is unusual due to him usually being a savoury sort. He tells me he gets a nasty taste in his mouth as well.

Hope all is well with everyone, and for us I hope this weekend is a bit better,even if we don't do anything.

Vicki x

[VickiParticipant]

Hi Jean

Hope all is well with you both. See my post to ann. Colin has been in hospital but out now. He picked up a chest infection. Feels really fed up as he is wondering whether he will ever be fit again. Hope the treatment is going well form your hubby.

Vicki 🙂

[jmsmythParticipant]

Hi Vicki
Glad to hear that Colin is out of hospital. Frank says he feels like some aliens has taken over his body. He's going to ask for CDT to be reduced. Iif it's reduced shurely the medication won't work as well. More questions to ask consultant.

Best wishes to you and Colin
Love Jean xx

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