[bandityogaParticipant]

Ian's light chains are now down to 52 so he is having a good response. Thank goodness something is going his way.

He is on day 8 of antibiotics and is responding well but he has now contracted shingles.

Maureen

[tomParticipant]

Hi Maureen and Ian

Its good to hear of a good response but its slightly blighted with the shingle I bet.
Take care

Love Tom Onwards and Upwards xxx

[scott9Participant]

This is a tough old disease. You and Ian have my sympathy. If its any consolation, my light chains are down to 137 and that seems as good as it will get. I now have to cope with low (0.6) neutrophils and the associated bad feelings that go with it.

As the song goes, things can only get better…

Keep fighting.

Scott

[bandityogaParticipant]

Hi Scott

Ian has had treatment stopped to let the bed sore heal but consultant thinks that 54 is near normal and doesn't think he will get more treatment. A SCT is not on the cards at the moment until we see how mobile Ian can get. Did you get maintenance treatment when you stopped treatment?

Hope your light chains come down some more.

Maureen

[scott9Participant]

My light chains won't come down any further as I won't be getting any more chemo treatment now.

I did get maintenance treatment when I stopped the first round of treatment. I was on Revlamid for about a year and then the cancer came back again. I opted not to have the SCT at that time. Maybe now though.

All the best

Scott

[bandityogaParticipant]

Hi Scott

Thanks for your reply. I asked the consultant if Ian would get a maintenance drug and he said no but Ian received zometa iv yesterday and he will get it again on his next visit in May. Is this not a maintenance drug>

Hope you can decide soon whether to go for an SCT but it is a big decision and some people get years of remission and others months. Wish they could find a cure.

Take care

Maureen

[scott9Participant]

Zometa is not maintenance for the cancer. It is to help with the bone damage caused by the cancer. Mind you, I'm not even on that due to my having impaired kidneys. Zometa can cause damage to your kidneys and as mine are only working at about 20% there is not much room for further damage.

I'm due to go to the hospital on Monday so I'll find then out what might happen to me next. I know the SCT route works for most people but you do have to go through the wringer with that and if time is short, I want to be able to enjoy every day as best as possible. The SCT will make life difficult for some months. Ah well, if it has to be done then so be it.

All the best

Scott

[EvaParticipant]

Dear Maureen,
Sp happy things are working are working out. That's a superb response. Sorry about the shingles- I believe it can be very painful.
Thinking of you both,
Eva

[bandityogaParticipant]

Hi Scott

Thanks for your advice. Should we ask for maintenance treatment as we have private insurance.

Let me know how you get on on Monday.

Maureen

[bandityogaParticipant]

Hi Eva

At last things are getting better. The shingles have now gone and I have had some respite this week as I have only gone in once a day as Ian has had other visitors. The consultant said Ian had an excellent response to treatment so I hope he has a long remmission.

Did you get any maintenance treatment after CDT? Should we ask for dexa scans as we still have private health insurance.

How are you on velcade. I am off work niext week so I will phone you one night.

Maureen x

[scott9Participant]

Well if there is a good reason for him not to have the SCT then maintenance is certainly an option if you have private cover. I was on Revlamid as maintenance for a year then it stopped working. I would ask if I were you.

Good luck.

Scott

[janwParticipant]

Hi Maureen

I'm so pleased to read your husband's light chains have reduced to a low level. My CDT and SCT were covered with my husband's private medical insurance provided via his long term employer. The actual insurance cover was with Aviva. They were very good at covering all of the bills for my initial treatment.

However, when I had received five month's Zometa infusions after my SCT, Aviva wrote to me stating they would only fund a total of 6 months of a continuous treatment. They had previously issued the same warning with Thalidomide. I also didn't realise that due to my insurance claim for cancer treatment, the following year all of the employees working for my husband's employer, and the actual employer, had their monthly medical insurance contributions increased. I suppose it's the same as if you make a claim on your car insurance, then your cover tends to be increased for future cover.

I could not continue to be monitored by my private consultant and receive Zometa under NHS, so I changed all of my treatment to the NHS and I couldn't be happier with their multi team approach to myeloma. To pay privately for Zometa would have cost around £600 – £1000 per month depending on which private organisation/hospital I used to provide the drug, because you need to pay for the drug and the time/facilities for a nurse to administer the drug by IV.

I would suggest you possibly speak with your private medical insurance provider to see whether they place any restrictions on long term cancer treatment for myeloma such as maintenance.

All the best.
Jan

[bandityogaParticipant]

Hi Jan

Thanks for the information. Ian's light chains are 52 and the treatment has stopped. He is receiving zometa every 3 weeks at the moment and being monitored by the NHS. Consultant said 52 was near normal bloods. What is normal? SCT is ruled out at the moment until we see how much mobility Ian has.

Mauren

[janwParticipant]

Hi Maureen

I'm not sure what normal levels of Kappa/Lambda light chains should be for myeloma patients. All I know is that the cancer treatment aims to reduce the light chains to as low as possible. Mine were reduced from 2,200 to 45 after treatment which were considered to be good, so Ian's results at 52 also look good. What were they before treatment?

After many questions, my consultant has given me an upper level of 800-1000 kappa light chains before further investigations are required before launching into the next round of treatment, unless I start to experience problems such as increased bone pain, fractures or recurring infections. He tells me that he has learnt over the years not to respond to one light chain reading especially if no prior pattern has been established, but there needs to be several readings over a period before a possible relapse is confirmed.

My kappa light chains currently stand at 600, with a scare last Christmas when they increased to 800 following a cold virus, but returned to 600 a few months later. Apparently the body increases its production of light chains when fighting bacterial infections, but the levels tend to decrease a short time after you recover from the infection.

Although my levels have gone up and down over the last year, I appear to have reached a plateau at around 600. This is still too close for comfort and certainly raises my stress levels when I have blood tests taken every two months.

Jan

[HelenParticipant]

Dear Maureen
Two sorts of free light chains – ask for both results, as a rough rule the lambda is about twice the kappa but there is a range.

Normal kappa is 3.3-19.4, lambda 5.7-26.3 (gms p Dl)

I'm no mathematician but I think the following is correct, no doubt someone else could make it easier to work out!

If you divide the kappa by the lambda numbers you get the ratio of one to the other. Normal ratio is 0.26-1.65
So if k is 5 and l is 24 the equation is 5/24 = 0.2 which is normal ratio range
L 119, k 13.6 is 13.6/119 = 0.114 outside range with lambda increase
You have to make sure you get the calculation the right way round

Mine went from 600 to 0 before SCT now they are back to 94
Love Helen

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