[janwParticipant]

Hi Avril

I think the decision as to whether you need further treatment is very much decided by the specialists based on each myeloma patient’s medical history and any current concerns. Various factors appear to be taken into consideration by your consultant in addition to your light chain levels which include: whether your blood test results are OK; any kidney function problems; whether you are experiencing any additional bone pain; your general health; the levels your light chains were when you had previous treatment; the rate your light chains are increasing; together with any concerns which you may have about your overall health.

Following four cycles of CDT and an SCT in 2010, my light chains increased and decreased at a fairly slow rate but sometimes erratic rate from 32 to 1990 over a period of five years. Although I felt OK and all of my bloods were OK, my consultant was worried my myeloma was becoming more active because my light chain increases over 2015 were beginning to show sharper rises and falls as well as reaching the level of over 2000 which at this level caused three vertebrae to collapse when I was diagnosed with myeloma in 2010. Therefore in October 2015, a decision was made to start treatment again to try to reduce the light chain level.

I think you need put the same question to your consultant in order to open discussions about how any future decisions are made as to when, or if any relapse treatment might be necessary for you. If you can’t get any answers then as Peter has suggested you could speak to your myeloma nurse who can also liaise with your consultant if required.

Jan

[avrilro55Participant]

Hi Jan

thanks for taking the time for your post.mimdo have an excellent understanding with both my Myeloma Nurse and my consultant at Addenbrookes. I due tosee them again March so will ask some questions. When my Myeloma was diagnosed two years ago my light chains were 350 all,other bloods good only problem was the solitary plasmacytoma which was treated by radiotherapy then CDT. My light chains went downnto 35 when i stopped treatment. Now about the same as they were before i started CDT. I lucky no other health problems and kidneys excellent.mmost people seem to go down SCT route which i am not. Guess i will have my holiday and will think about it. I always been curious and tried to guage what next treatment consists. Happy New Year and thanks

[janwParticipant]

Hi Avril

It’s good to hear that you have an excellent relationship with your myeloma team. Hopefully you will not require any further treatment for many years. If you are curious about treatments, I don’t know whether you have attended a myeloma uk information day, but there is always a very interesting and informative part of the day which covers present and future treatments for myeloma. I usually try to go to the day each year just to keep uptodate about the changes in future treatments, as well as listening and learning from other myeloma patients. With your first treatment being CDT, at present the agreed protocol for second treatment in England is usually Velcade followed by Revlimind as third line treatment, unless there are suitable clinical trials available which you can consider. It’s just depressing and concerning to think about new clinically proven myeloma drugs being turned down by government due to their financial costs.
Jan

[avrilro55Participant]

Hi Jan

yes, i will go to the info day, there is one in Norwich in March which is very close to whete i live. I got to be honest, up until now i have been burying my head in the sand not wanting to know too much, but i have just started to get curious. I am lucky i feel so well , i was left with after effects from radiotherapy and the subsequent medication which i have learned to live with, ie, deafness through radiotherapy and acid reflux through medication, plus now have false teeth as the bone infusion ruined my teeth. LOL, but this is a small price to pay when i hear how other people are. I am a young 73 and up until i had this plasmacytoma then myeloma diagnosis have sailed through life without even so much as any tablet, i guess it came as a shock. However i not unduly worried, i am a very positive Person, have a great supportive family so i count myself as lucky. We are off on holiday next weekend for three Weeks for some lovely sun. Stay well and thank you for your great comments. Avril

[cartdawParticipant]

Hi jan Iv just had excellent results 3mths post SCT. Pp 2 and normal bone marrow result.  I will be monitored every 8/12 weeks or so. My light chains have always been on the high side 700 prior to SCT and 2400 prior CDT in March so much lower.  Did you have any treatment when they rose or is it a watch and wait. My cons not concerned about light chains at the moment.  I’m hoping for a good remission. I’m on the myeloma XI trial so waiting to see if I’m randomised to maintenance or not.  Light chains haven’t been tested again yet.

[cartdawParticipant]

Hy jan my name is dawn x

[avrilro55Participant]

Hi Jan

took your advice and booked the info day in Norwich on 5 March!! I had my bone infusion yesterday and checked my bloods etc taken in December all within normal limits with the exception of my light chain which had risen to 600 (from 300 in October) which was  a shame. Still going on holiday on Tuesday so not going to think about til i come back. I count myself lucky i have no aches and pains.

Thank you for your responses.

 

avril

[janwParticipant]

Hi Dawn

Your pp results have been excellent following your SCT which is great news and long may they continue to remain low. It’s worth asking for regular light chain tests as part of your monitoring process at your regular visit to your consultant in order that you can monitor whether they are remaining at their present level or increasing. Now that I am approaching a possible second SCT, I am being asked by my present consultant what were my light chain levels post CDT and pre/after my first SCT in order to provide information on my response to CDT and subsequent chemo prior to SCT. I know my light chains were 2300 at diagnosis and were 32 after SCT, but I did not ask for my light chain results following four cycles of CDT or prior to stem cell transplant. I did not ask for my bone marrow biopsy results because I was so overwhelmed at being diagnosed with myeloma, then actually undergoing chemo, coping with the side effects and as well as approaching the unknown factor of an SCT. Because I have changed consultants and hospitals since my first SCT, the information appears to have disappeared in the system.

Since my SCT in 2010, I have not received any further treatment until October 2015 when my light chains were 1900 and close to their original level of 2300 when they caused bone problems for me. Hope this is helpful.

Jan x

[janwParticipant]

Hi Avril

I hope you find the information session useful in Norwich, as well as thoroughly enjoying your upcoming holiday with the warmth of the sun. Do you know of any reason for your light chains increasing, i.e. have you had a cold virus or an infection? In the past, my light chains have increased by around 300 following a cold virus and again by a further 300 when I had shingles. They usually took two months to show any signs of decreasing following a virus. My light chain results have increased and decreased over the past five years, but with an overall trend of steadily increasing. If all your other results are OK, your consultant will probably want to take a few more light chain results to see whether there is an overall increasing trend before making any decision on further treatment.

Jan

[mhnevillParticipant]

Hi Averil

After my operation and radiotherapy for a plasmacytoma I had a year without any treatment except tablets for bone strengthening. I then had a bad period and had six lots of CDT. I then had three years of nothing else but bone strengthening infusions. These only dis continued because my kidney function was deteriorating.

I used to be on six monthly Consultant appointments. Now on two to three monthly visits.

The key is don’t worry if you feel well and if you are at hospital every four weeks you can always raise ant worries then.

Go well!

Best wishes.

Mavis

[buzzParticipant]

Hi All

This is my first ever post on the forum. I was diagnosed in Aug 2014 and due to my youngish age (now 48) I opted to go on the Myeloma XI trial. I had CCRD for 4 cycles responding very well with levels of over 2000 dropping to virtually zero after 2 cycles then to nothing.

I had my stem cells harvested and had an auto SCT in February 2015, was also given Revlimid as a maintenance treatment and until 2 days ago was told I was in complete remission. However it appears the MM has now broken back through with my levels now at about 250.

I WOULD LOVE TO HEAR SOME GOOD NEWS RIGHT NOW!! It really feels like I went for the gold standard treatment and got a relatively short period of remission. Now I am waiting to hear what my options are but I feel lost and confused, almost worse than when first diagnosed. I guess I put too much faith in SCT and now want to know what I can expect or hope for.

Feeling very frightened and low and my wife having been a pillar of strength is really down so I thought it best to seek some support and information on the forum.

Thanks for reading this. Any replies welcome and suggestions for coping gratefully received.

[janwParticipant]

Hi

It’s so emotional and worrying for you when you see your light chains rising so soon after a sct. However it’s early days and your levels might fall at your next test or further increases might be very small. After my sct in 2010, my light chains were 30, they slowly climbed up and down to 1900 after a long period of five years. I only started relapse treatment October last year, because my light chains were reaching their original level from 2010 when the myeloma caused three collapsed vertebrae. Generally apart from the usual fatigue and general bone pain, I felt fine with no extra bone, no kidney problems and my blood test results were good. I would think that your consultant will be taking further tests over the coming months to determine whether you do have an upward trend and to what extent, before any decision is made whether you will be discussing further treatment.

My light chain levels did not steadily rise over the five years. They fluctuated both upwards and downwards sometimes due to infections or a cold virus and sometimes without any reasons. Both shingles and cold virus increased my light chains by 300, but they reduced again over a period of a couple of months.

I hope all goes well with your next few sets of results. It is difficult when you don’t know what is happening with your myeloma.

All the best.
Jan

[buzzParticipant]

Hi Jan

Many thanks for your reply. It has helped me put a bit of perspective on the return of the myeloma. I think it is now time I started to try to understand this disease a bit more and also what my specific type is.

Having followed the Myeloma XI trial and got through it relatively well and then had  the SCT and again responded well I gave very little consideration to what would happen when I did relapse so I am now trying to work out what my next course of treatment might be.

You appear to have had a long treatment free period where your light chains went up and down and you did not start treatment until they went above 2000. Did you have a bone marrow biopsy? Do you know what % this showed ? Also how were your neutrophils at this time?

My consultant seemed to be implying I would need to move on to a different treatment soon as the last 3 light chain readings were 26 then 98 and now 250 over the space of 3 months. As I am on the trial I am tested every month so I guess we would need to see what this months are.

So many questions! Fully understand you are not an expert but if you have any advice as to what I should be asking that would help.

For what it’s worth still feel relatively fit. I am working full time, I can walk for as long as I need to and have just spent 8 hours going around Harry Potter studios with my kids last week!

Thanks again for your reply, would be very grateful for any more insights.

Buzz

 

• This reply was modified 8 years, 8 months ago by  buzz.

[buzzParticipant]

Hi Jan

Just read through some of your earlier replies and looks like you have already answered most of my questions!

However happy to hear from you again if you get a chance.

Buzz

[janwParticipant]

Hi Buzz

When I was first diagnosed with myeloma on my 53rd birthday, I was completely overwhelmed by having to go through chemotherapy followed by a sct that I didn’t ask many questions about bone marrow biopsy results, neutrophils or light chain readings prior to sct. My consultant at the time didn’t answer specific questions about results, so I began to research myeloma on the web, but came across so many disheartening sites that I quickly stopped looking and focused instead on getting through the side effects of cdt followed by sct. It was only 9 months after the sct when my light chain levels started to rise after shingles and I thought I was relapsing that I began to read more about possible available treatment.

If you want to start to find out more about myeloma and available treatment, I found the local Myeloma UK information days extremely useful where you could meet other myeloma patients, a range of consultants and myeloma uk staff. After I experienced shingles, I found talking through my concerns and options on the phone with one of the specialist nurses at Myeloma uK was also very useful. The Myeloma Beacon website contains a wealth of useful information about myeloma drugs, a forum and links to other related sites.

You asked about my neutrophil levels, which have always been low since treatment. However I haven’t a clue as to what they were prior to myeloma. They tend to range from 1.2 to around 1.4, which has been a concern to me particularly as some clinical trials will not accept you if your neutrophils are 1.0 or below. But since my sct, the rest of my blood test and kidney results have always been OK.

Jan

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