Hi, You are right in that I find a second sct quite a daunting prospect especially as I found the first one so exhausting and it took me a good six months to recover sufficient to venture outside the house. Obviously the procedure was not helped by the fact that I couldn’t get my nausea under control with the four cycles of cdt as well as during time in hospital for the stem cell even with three different anti nausea drugs plus driver being pumped into me. Overall, I lost almost five stone in weight from April to September 2010 and felt very weak as a result. I also didn’t have much time for my body to recover from the end of cdt treatment until sct i.e. four weeks. Usually, it appears 8 to 10 weeks are given for recovery and to organise treatment of the sct.
When my consultant first mentioned a possible second sct when I started to relapse, my initial reaction was no because of how I felt in hospital and for months afterwards. However, after achieving just over five years of drug free remission since my first sct, then apparently I have good prospects of achieving a further 2 or 3 years, or more from a second sct according to the research on the myeloma X trial. I tend to react to the side effects from drugs, therefore the prospects of some further years without any drugs is very appealing. If I actually get to undertaking a second sct depending on the Velcade results, then as you say just like pregnancy experience I need to think positive and think it’s all over in a short period and the benefits might be great. Perhaps a second sct might be a lot easier, just like my second pregnancy and birth? I can only hope.
Jan
Hi Helen,
Reading your title of five years suddenly made me think that it was six years ago this month when my three vertebrae collapsed which certainly speeded up my diagnosis of myeloma. I still remember going through my sct in Sept 2010 and being told at the 100 day consultation meeting afterwards that I would be lucky to achieve two years remission. It’s good news that the newer drugs are managing to extend the lives of myeloma patients with many more of us achieving five years or longer living with myeloma. As you say, we learn to put up with the various side effects of fatigue, bone pain, numbness in feet, rounded shoulders, loss of taste and smell, together with the good and bad days.
Keep positive and look forward to many more years ahead of you.
Jan x
Hi Sonia
It’s good news that your husband’s chemotherapy treatment has worked and he is now into the procedure for an sct. I am sorry that no one has replied to your post so far. There are a quite number of people on this forum who have undergone an sct, but I don’t know if any one has had theirs done at Southampton hospital. Hopefully you will get some more replies to your enquiry.
My sct was just over five years ago and I am currently undergoing chemo with a view to progressing onto a second sct later this year. From a practical point of view, I remember not having sufficient pjs because of loose bowel problems and soiling quite a few clothes! I also had to have some liners for my pants to help. Passing the time at hospital can be boring and requires some different activities to keep you occupied such as books, newspapers, tv, phone, DVDs and laptop but the electrical items depends on the facilities and network connections. I was not allowed a fan during pthe hot summer months. If there’s a fridge then some cold drinks, yogurt and ice lollies are welcome treats together with any snacks such as biscuits, squash and sweets for your bedside table. However,
I had nausea for over 12 days and couldn’t eat or drink anything, so I was constantly on a drip. My mouth was so sore and sometimes dry that eating was painful. Some patients take in their own duvets/throws, but you need to check with the hospital about their washing regulations.
I hope all goes ok for your husband and he recovers well.
Regards Jan
janw.
Hi Helen
Good to hear from you. I’m not sure about the transplant yet because my light chains increased from 150 to 350 after just two weeks rest from the drugs over Christmas. I’m now on a five week cycle of a Velcade injection once a week, with one week off with a possible four cycles to complete. Cyclophosamide has been taken out of the treatment because it was thought to be reducing my blood levels too much. The once a week injection is much easier on my body and has shown to raise my blood test results to the highest levels I have achieved since having myeloma in 2010. However whether my light chains are back under control will be shown over the next two weeks.
How long did you have to wait from the end of your treatment until you had your act? with my first sct I only waited four weeks, however this hospital appears to have eight to ten weeks gap inbetween end of treatment and sct in order to allow your body to recover a bit more following the side effects from the drugs.
Regards Jan x
Hi Maureen
Good to hear Ian’s latest results are good and you can look forward to your holidays in March and June. My consultant wants to reduce my light chains to below 100, but since they increased from 150 to 350 then I still have a long way to go and I’ve yet to find out if Velcade is still working. Coming off the cyclophosamide and spreading the injections to once a week with rising light chains might not be the best way forward. My next light chain test results will be in two weeks time. How long did Ian wait from the end of his treatment to sct?
My son is booked in for his tonsillitis op for Easter Friday and hubby is now undergoing private physio on his shoulder every week. The physiotherapist thinks the pain in his shoulder is down to poor posture either from too much computer work or from driving, which is a totally different message from the one he received from his hospital x Ray’s. Not sure who is right? We will have to wait and see if the physio improves his pain and arm movement.
Fortunately we are not affected by the heavy rainfalls, apart from some local flooding of roads and subsequent damage to the tarmac road surface causing some very deep pot holes. Last week driving back from the hospital in the dark, my mini hit a bad pot hole causing £350 worth of damage to the alloy wheel, together with a further £150 for a new wheel! An expensive outing.
regards Jan x
Hi Brenda,
it’s good news to read you achieved eight years of remission.
After five years of remission, my lambs light chains had increased to 1900, therefore I started VCD in October 2015 with a view to achieving a 90% reduction in light chain levels to be considered for a second stem cell transplant. I was initially on four, three weekly cycles which involves two weeks of treatment followed by a week off. The treatment consisted of Velcade injections in the stomach area twice a week for two weeks administered at hospital, together with cyclophosamide tablets on Mondays and Dex tablets for two days around every Velcade injection. Overall, cycles one, two and three gradually decreased my energy levels and coping with the sleepless nights of Dex can be exhausting. However by cycle four, my energy levels were really low and I felt totally exhausted which was reflected in my blood results of very low blood counts with me neuts at 0.65 and platelets at 75.
The good news is that my light chains reduced to 150 after four cycles of treatment, but following two weeks off drugs over Christmas they increased to 350. Due to peripheral neuropathy in my right leg at the end of cycle one, my Velcade injection strength was reduced to help with the leg pain. By the end of cycle four, I was in thermal socks, electric blanket at night and extra bed clothes to cope with the leg pain in the cold weather. The two weeks off helped reduce the leg symptoms.
I am currently on a further two to four cycles of just Velcade and Dex, with the Velcade injections being reduced to once a week to help with the leg pain. The cycles are now five weeks with four weeks of once a week Velcade injections and the fifth week without any drugs. For me, this regime has been much kinder on my body with my blood results showing big improvements in white and red blood cell counts, together with a good iron level, platelet count and my neuts have been their highest in the last six years. But whether this new five weekly cycle without cyclophosamide manages to control my light chains has yet to be seen.
The Velcade injections are painless and very quick, but they do cause a small red patch around the injection site for around five days which can be helped by applying hydrocortisone cream. The frustrating part of the Velcade injections can be the waiting time at hospital for a two minute quick injection. Quite often I have to wait up to a couple of hours for an available chair and appropriate member of staff to administer the injection. Your blood results also have to be monitored every week prior to the injection, which adds more time to the process.
Hi Maureen
A Happy New Year to both you and Ian. I’m glad Ian’s cough disappeared before Christmas and that you had a good time over the festive season with your son and grandchildren. Like you, I also increased my weight due to all of the chocolates, biscuits and extra food I was eating whilst being off chemo. My son’s were great over Christmas because they cooked lunch, carved the turkey and helped with the clearing up afterwards. It’s impressive to see the skills they have developed since leaving home for uni and then work.
My younger son’s tonsil operation is being scheduled for the end of March so that he can have a chance of recovery during the two weeks off from teaching job over the Easter hols. Hubby keeps forgetting his sore shoulder and keeps raising his arm above his shoulder which causes him considerable pain and further tissue damage. Unfortunately physio is fully booked until February.
I felt much better after being given two weeks off chemo over Christmas and apparently my bloods have recovered well. The light chains have significantly fallen from 1900 in October to 157 at the end of December which meets the 90% reduction target to be considered for a second SCT. However my consultant wants to see whether the light chains can be reduced even further, therefore I restart chemo next week. Due to the increased nerve damage in my one leg, which is so painful at times, the velcade will be at a reduced rate of only one injection per week together with dex for four weeks, then a week off to recover. I’ve been taken off the cylophosamide due to the side effects which I’m experiencing with this drug. If my light chains continue to reduce, then chemo will continue for at least a further two cycles, but if the light chains increase or start to plateau then preparation for the possible second SCT will begin.
I hope Ian’s next appointment goes well next week. It’s always worrying when you wait to hear your results. I always phone up the myeloma nurse before my next consultant’s appointment for my light chain results, which at least prepares me for what might be discussed at my next visit.
Jan x
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
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
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
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
Hi Julie
Unfortunately like others have commented, for some myeloma patients fatigue can be part of the cancer and as a result of the side effects of the treatment. There are some useful tips on coping with fatigue on this site under the downloadable documents as well as information on the myeloma beacon site. I know how your husband feels because fatigue can be so frustrating especially when you were active prior to myeloma.
Your husband’s current fatigue might be mainly due to his recent cycles of chemotherapy and the short term side effects of the treatment. Perhaps his blood results are slightly low and just need a little more time to recover before he starts to feel better. I know when I completed four cycles of CDT in 2010, I was completely shattered, constantly sleeping and could hardly walk any distance without being out of breath. My blood results indicated that I needed some blood transfusions which certainly improved my energy levels prior to SCT.
I’m currently on a two week break after completing four cycles of VCD treatment due to my blood results being very low, which are causing me fatigue, lack of energy and breathlessness if I undertake any activities. Unfortunately chemotherapy can be so harsh on your body. We are all individual as to how we react to the drugs, the levels of side effects which we experience and the time it takes us to recover from any treatments. Like others have said, the best advice is to listen to your body, rest when necessary and take each day as it comes. Your husband’s consultant will also do his/her best to ensure your husband is fit and well enough to undertake his SCT.
I hope his SCT goes well.
Jan
Hi Tony
Sounds so similar to our household. Our no 2 son was on crutches last Christmas following an ankle op after messing around during a first team league cricket match with a football and got himself kicked on the ankle without any protection.
Sorry to hear about your stay in hospital, but it’s the best place to be if there is a suspected infection. How has your treatment been going? Do you feel exhausted or have you still got some energy? When are you due your second sct? My fourth cycle of treatment has really reduced my energy levels and all was explained at clinic today with a very low set of blood results, with neuts 0.66, white blood cells 0.99 together with platelets at around 60. However, the good news is that I’ve been given two weeks off chemo to recover which is very welcome over Xmas. The bad news is that I need to go through another two cycles to try to reduce the light chains down as much as possible.
Our partners certainly have to deal with so much whilst we are ill and we rely on them so much to help us through the good and tough times.
Jan
Hi Maureen
With a low immunity, you always worry about whether a cough is going to develop into a chest infection. No doubt Ian will be monitoring his temperature over Christmas and at least you will both be able to relax a little with xmas dinner at your son’s house, although you will probably both be exhausted playing with little energetic grand daughters.
I think health is on the agenda in our house for the start of the year, because the youngest son is due to see a consultant about removing his tonsils following five bouts of tonsillitis and antibiotics this year. Hubby has apparently torn a muscle in his upper arm and might need an op according to the GP. Should be interesting fitting in a stem cell transplant around their ops!
Best wishes for an enjoyable Christmas and New Year with your family.
Jan x
Hi Sandra, I know what you mean about being in shock once the consultant mentions further possible treatment, especially when you only have limited time during an appointment and it’s been four years since your last treatment. When my light chains started rising three years ago, I started phoning the myeloma nurse at the clinic before my next consultant’s visit in order to be more prepared to discuss possible options if further treatment was necessary. It was my way of handling the prospect of treatment. Why don’t you try to ring the myeloma nurse at your hospital and ask about your results from your previous visit which should provide you with some more info. Most times the consultant also sends the latest results to your GP. You could also try this route for further details. Your doctor might just be raising the idea about possible treatment, but it might not be necessary for some considerable time.
Jan
Hi Katy
I’m aged 58 years and currently going through treatment again for my relapsed myeloma. However my first CDT treatment followed by stem cell gave me five years of drug free remission. I think one of the hardest parts of accepting the treatment for your mom is when she is feeling so feel so well. But as others have said above, the treatment can be tough and tiring, but it’s usually only for a short period.
With me going through treatment again, I would advise your mom to read the myeloma material about her specific type of proposed treatment so that she can ask her consultant any questions which she may have about her cycles/drugs. Myeloma uk also have a useful patient’s diary and a tips book. Before the start of treatment, I would suggest she has ensured she has had the flu jab, also a haircut is another essential just in case the fatigue gets too much. I also stocked the freezer with some ready meals for hubby, because he is not too good at cooking! I purchased some more pj’s as I did’t have many with me relying on hubby to do most of the washing because fatigue has become more of an issue three months into treatment. Nausea can be an problem with some of the drugs, but again keep ongoing discussions with the consultant about the different range of nausea drugs available.
I hope all goes well with your Mom’s treatment. Whilst on treatment, she just needs to listen to her body and only do things which she feels able to undertake.
Jan x
