Hi Helen
Unfortunately last week’s light chain results increased by a significant amount and I was called back into clinic. I start treatment as soon as the hospital can organise the start of my twice weekly velcade injections. Came home this evening from clinic with a big bag of drugs, which certainly brings back not so fond memories of the CDT treatment five years ago.
Jan x
Hi Mervyn
If it wasn’t for the regular monitoring of my blood and urine at clinic appointments, then I wouldn’t know that I was relapsing. I feel absolutely fine. I’ve had bone pain and fatigue ever since my SCT, but the bone pain is controlled with pain patches and I’ve learnt to live with the fatigue by resting when necessary.
I have light chain myeloma, with normal blood test results and normal paraprotein levels. Therefore the only way of knowing whether my myeloma showed signs of returning was via the urine tests carried out at clinic. After my SCT, my light chains were very low, however over the past fives years they have gradually increased to a level which now requires further treatment.
When you go back to clinic, your consultant will usually ask you whether you feel OK, whether you have had any infections, bone pain, kidney pain or any concerns about your health. Your consultant will then review your blood and urine tests to see what is happening to your myeloma levels, blood counts, kidney functions, platelet counts, neuts, etc in order to obtain a full picture as to what is happening to your myeloma. You need to ask what your paraprotein levels are from your blood tests if you want to monitor whether your levels are increasing. If there are any reasons for concern, you will usually be asked to attend clinic on a more regular basis.
Hopefully you will achieve a good period of remission following your recent SCT.
All the best
Jan
Hi Ian,
I was 53 when I had my SCT after four successful cycles of CDT. My consultant advised that I would be able to return to work after three months. I know some myeloma patients recover very quickly after their SCT, but I suffered with nausea, severe fatigue and bone pain. For the first six months, I had no energy and found even pottering around the house too tiring. It took my gums three years to recover from the drugs. But on the positive side, the SCT has managed to give me five years of remission, which is much longer than I expected to achieve. My energy levels improved slowly over my period of remission, but I have learnt to adjust and listen to my body when I need to rest.
I think you will always be worried about going through a SCT, but at least you have this as a possible treatment option. SCTs can provide you with the best chance of achieving a long period of remission. As I rapidly approach my first relapse, I am also concerned about going through another SCT. My head tells me a second SCT is my best option, but my heart sinks at the thought the side effects of the treatment.
All the best
Jan
Hi Maureen
Terrific results for Ian. You both must both be so happy about the results. Enjoy your holiday in Ibiza.
All the best
Jan
Hi Andy
It’s good news to hear you are on the recovery after your pneumonia, which appears to take hold of us myeloma patients so quickly, especially when our immune systems are weak during treatment and sometimes after treatment. The UK weather in September is supposed to improve towards the end of this week. Hopefully you will be able to sit in the garden, relax and plan your holiday for next year.
Jan
Dear Vicki
I haven’t been on the site for some time, until I read the devastating newspaper articles at the weekend about myeloma drugs being axed from the cancer drug fund. I am really saddened to hear Colin lost his struggle with myeloma, especially as he battled and persevered so hard over the last few months. My thoughts, prayers and heartfelt sympathies go out to you Vicki. Such news is certainly a sobering reminder of the severity of this cancer and how challenging it is to treat.
Often when I read your forum posts alongside the photo of you both, I always thought how close, happy and content you looked together. I hope you can get comfort remembering the wonderful life, affection and deep love you both shared, especially the recent special memory of your wedding.
Living with an incurable cancer is tough on everyone, especially the carer. Colin was very fortunate to have you by his side, helping him through the difficult and emotional times he has faced over the past few years. I wish you all the best during this hard and painful time and I hope you will be able to find moments of peace in the months ahead.
Love and hugs Jan
Hi Jean,
I hope you both enjoyed your cruise holiday. So sorry to hear Mike has ended up in hospital with a chest infection. Presumably he might have caught a virus from a fellow passenger on the cruise or the return airplane? But it’s good news that he is recovering well after his time in hospital. Perhaps with his immune system being low, the consultant might suggest a few weeks off from his cancer treatment whilst his immune system recovers. But if pomalidomide is working well, then I would presume there would be no reasons why his treatment couldn’t continue. All the best for his clinic appointment on Thursday.
Regards
Jan
Hi Helen
I know how you feel not being able to tackle those tasks around the house and garden, which were easy to undertake prior to myeloma. Last week,wWe purchased a branch cutter for our tree in the back garden. I didn’t even have the strength to raise the cutter in the air in order for it to reach the branch. Hubby now has to deal with all of the heavier jobs around the house and garden, which leaves me frustrated. I used to really enjoy planting, pruning and general gardening but I’m not restricted to dead heading the flowers! It’s good to read that both you and Andy are doing well on pomalidomide, especially with the recent depressing news about the drug being denied to new relapsed patients as from November. Removing hope for patients being able to obtain an effective treatment after two relapses is such a blow. I can’t believe the rest of Europe is able to offer and fund the drug, but not England.
My youngest son returned home after qualifying as a primary teacher. He has now managed to find rental accommodation in Burton and finally moved out this week. Although we will miss his company, I’m pleased he has found accommodation before he starts his teaching position and brings cold germs into the house.
As regards my increasing light chains, I’m now in the danger zone according to my consultant. I have to wait for last week’s test results to see whether my light chains are continuing to increase, which will another test asap before a decision is made to commence treatment. Fingers crossed, the results will show some decrease which will provide me with a few more months before drugs. A few more months without treatment is a blessing and a terrific bonus.
Take care.
Jan x
I was so emotionally upset this morning when I read the newspaper articles about withdrawal of a number of effective drugs from the cancer fund for blood cancer patients. At present, blood cancer is the UK’s third biggest killer, but unfortunately with little public awareness as compared with other cancers such as breast and prostrate.
Whilst I realise the cancer fund is over subscribed with ever increasing costs, when new drugs are recognised as clinically effective but denied on a cost basis, this leaves patients with little hope of personalised cancer treatment, or ever finding a cure for their cancers and more specifically removes the hope of patients for an effective treatment and a quality life with more time with our families and friends.
Pomalidomide was only available to myeloma patients, when two other treatments had failed, offering them hope of overcoming resistance to the other immunomodulatory agents. The newspaper articles estimate just over a 100 myeloma patients will be affected by denial of this drug. But as the standard treatments begin to prolong life expectancy for myeloma patients, presumably the number of cancer patients being denied access to this drug will substantially increase?
Pomalidomide has gone through the lengthy and costly process of R&D and clinical trials before being recognised as clinically effective and gaining fast track approved for use by myeloma patients in America in 2013, followed by approval in Europe and eventually the UK. I just don’t understand why the drug is only denied in England, where as authorities in Scotland and Wales appear to be able to fund the drug, as well as the rest of Europe. Being part of the EU, we should have cancer treatments at comparable levels with the rest of Europe.
We are extremely fortunate to have Myeloma UK fighting our battles with the Government. However, I feel they need to action our support to lobby the Government and seek justice for myeloma patients. We should be bringing together the 1,000’s of myeloma patients and relatives to the appropriate HQ to protest against the latest decisions. In particular. we should be approaching David Cameron, who promised in 2012 that patients would no longer be denied drugs on cost grounds.
The NHS does have a limited budget, but Like others have also said, when looking at saving and cutting costs in the NHS. One area requiring immediate attention is the abuse by health tourists who take advantage of the health service which is estimated at 2 billion pounds a year (2013) and in reality only a fraction of these costs are ever recovered. The NHS is handing out 5 million european health insurance cards per year with no records being kept of cards being issued to overseas citizens, with apparently some eastern europeans using them in their home country to make the NHS cover costs. Surely, we should be able to put into place effective systems and procedures to stop abuse of our NHS. Two billion pounds would go a long way to provide necessary treatment for UK citizens.
Jan
Hi,
I’ve also read quite a lot of information about cancer loving refined sugar. I think you are absolutely correct to see whether reducing refined sugar from your diet can reduce your myeloma levels. I hope your myeloma continues to show improvement.
Have you had a chance to read the interesting discussion on the forum section of the Myeloma Beacon site about not only reducing refined sugar intake, but also reducing protein intake? There’s a link under Ketogenic diet together with other discussions on sugar intake levels.
With my light chain levels rising, I’m trying to not only increase my fluid intake, as well as reduce my sugar intake, which is hard when I bake cakes for the family and can’t eat them.
Regards Jan
Hi Lolly
The combination of drugs is certainly working for Steve. I suspect his cold sensations and voice changes are all part of the many side effects which we can experience from the cocktail of cancer drugs in our bodies. Because maintenance drugs are not yet approval as regular treatment for myeloma in the UK, perhaps if you read through some of the forum comments on the Myeloma Beacon website where maintenance is more usual in America, you might be able find some more specific answers to your questions about side effects from Steve’s combination of drugs.
Yes, I read the interesting article in the Mail on Sunday about Elotuzumab which is a monoclonal antibody which attaches itself to a specific protein in the myeloma cells helping the immune system recognise these cells and destroy them. The phase 111 clinical trials have been showing some good results from this drug. My consultant is also hopeful about another monoclonal antibody called daratumumab which has been in recent phase 1/11 trials with some promising results. Unfortunately, it’s the length of time we have to wait for these new drugs to be trialled, results to be analysed and if successful waiting for approval in America, Europe and then the UK. Otherwise it’s just being in the right place and right time to wait for these drugs to be available in a local clinical trial. But at least there are a variety of promising drugs coming through the pipeline in the future.
So far, I’ve been very fortunate to have almost achieved five years this September in remission without any drugs. However, my light chains levels still continue to rise with my consultant discussing the issue of relapse treatment.
Love Jan x
Hi Mervyn
You sound like you are coping well with the treatment. I wouldn’t worry too much about your appetite, because eventually it will return once your body recovers. I couldn’t eat any food for ten days whilst in hospital following my SCT due to constant nausea and sickness even with three different types of anti-sickness drugs. I slept through most of my hospital stay, unable to shower or move around much. I felt OK for a few hours every afternoon, but quickly became tired for the rest of the time. You just need to listen to your body and rest/sleep when necessary. Try to keep up your fluid intake if you can. And remember, you should start to feel better quite soon.
Regards
Jan
Hi Helen
Good news about your son completing his final recital for his degree. I hope he manages to achieve a good result and find work which he both enjoys as well as pays his bills. Will he be staying with you at home? You will certainly have your hands full trying to scale down your belongings and items before you move into a smaller property. It’s exhausting work, which I can fully appreciate after trying to completely clear my Dad’s four bed house before the new owners move into the property. Luckily my brother is able to help me with the heavy work and the regular visits to the local tip. Our garage is completely full with bags of items to be taken to charity shops from my Dad’s property, together with all of my youngest son’s contents of his last rented flat before he moves into new unfurnished rental accommodation in mid August.
Unfortunately my latest light chain results this month increased sharply to 1,500, therefore I’m back on the threshold for further treatment depending on my results in September. It’s time to quickly book a holiday. On the positive side, I’ve been very fortunate to achieve five years remission this September since my SCT in 2010, which is far better than the predicted two to three years which I was forecast in 2010.
Love Jan x
Hi Val,
As you say, it’s far better the medics found Peter’s myeloma readings before his SCT. He is in the right place to receive more chemo and to be carefully monitored in hospital throughout the process. Dealing with the ups and downs of such news is so stressful and worrying for both of you. As Maureen suggests, please see whether you can talk to his consultant to find out more about the current plan for treatment.
Regards Jan x
Hi Lolly
So pleased to read Steve is still in remission and long may this continue. What drugs is he currently taking as part of the trial? What parts of his body does he feel cold? Does he get the feeling during the warm or cold weather, or throughout the year?
Although the readings for my body temperature are quite normal, I feel my internal thermostat has completely broken since being diagnosed with myeloma. A few years prior to being diagnosed, I suffered very heavy hot flushes. Although, these flushes disappeared when going though SCT, I have noticed since my light chains have been steadily increasing then so have my hot flushes especially during the evening. But my feet have remained cold since chemo. I have to wear bed socks for 10 months of the year for most of the day and night. My upper thighs are also quite cold for most of the year. It’s a strange combo of hot and cold. When I go to bed during the evenings, the quilt is often pulled over my feet and legs, but my upper body is so hot that I feel overheated if I use the quilt. During the summer and winter months, our windows are permanently open throughout the year. Hubby has learnt that he needs to wrap up warm, but he is more than happy with the reduced central heating bills.
Regards Jan x
