Hi Jean,
I’m not sure whether a light chains increase with myeloma patients when they have an outbreak of shingles. A couple of years, I asked this question at a myeloma information day to one of the consultants and the answer was possibly, mainly because the immune system will be fighting the shingles virus which leaves the immune system more vulnerable for the myeloma to have the opportunity to increase a little.
Over the last four years, I’ve been lucky to only experience two colds and shingles. On all three occasions, my light chains showed a sharp increase by 200 for each cold and 400 for shingles. However, once I had recovered from the colds/shingles the light chain numbers would reduce over the following couple of months, but not to their original numbers because there appeared to be a slight increase after each illness. This is one of the reasons why I try to steer clear of catching a cold, not only because it takes me a good six weeks to shift the cold, but because of the overall increase in light chains.
If Frank is experiencing back pain, I would certainly ask about further investigations and ask whether all of his blood results are OK. I’m still taking daily tramadol and fentanyl patches for the back and rib pain associated with the collapsed vertebrae some 4 years ago and myeloma bone pain. The zometa has helped reduce the bone pain. However, the pain usually increases if I have been too active, or have sat for too long on a hard chair, or sat with a poor posture or have lifted some items over more than a couple of pounds in weight, such as a full kettle or bag of shopping. I have to listen to my body and take time to rest, otherwise my pain increases.
Regards
Jan x
Hi Angela,
Our family has been covered via private health insurance through my husband’s employment for many years. We have successfully used this insurance for short term treatment such as my son’s sports injury and my husband’s cataract surgery. The treatment was far quicker than the NHS would have been able to provide, which helps when you are trying to fit in surgery around your employment and personal commitments. However, when it comes to long term cancer treatment, based on my own experience I believe the NHS is the best way forward for patients.
Prior to my diagnosis of myeloma in 2010, I started to experience odd pains throughout my body which accumulated into severe kidney pains. My GP referred me to a private kidney specialist because we both thought I had a recurring kidney stone. After kidney investigations showed nothing unusual, I was referred to a gastro specialist due to severe pain in my ribcage and stomach area. Eventually after 3 vertebrae collapsed, an MRI scan was carried out during which the radiologist highlighted possible myeloma and I referred to a private haematologist. My subsequent myeloma treatment was excellent, but our local private hospital did not have the facilities to carry out the stem cell transplant or be able to insert a line which had to be carried out by another private hospital. My stem cell transplant procedure was undertaken at a local NHS hospital where my private consultant worked, which involved a completely different team of nurses and doctors.
During the regular assessments at the NHS hospital prior to the stem cell procedure, I was found to have low levels of iron. The NHS doctor recommended three bags of blood and a short spell in hospital, which my private consultant felt to be a little bit over the top. But I felt so much better after the blood transfusions. I went into hospital using a wheelchair through tiredness and shortness of breath, but left the hospital virtually skipping down the ward with an increased energy! The high level of care which I received whilst undergoing the high dose chemo, the district nurses visiting home for injections and subsequent stem cell treatment experience was excellent. What I immediately noticed about the NHS cancer treatment was the multi-disciplinary approach by the doctors where they worked together as a combined team consulting each other on a regular basis. I received quite a lot of advice and follow up treatment by the dietician as part of the NHS treatment.
The private health care insurance with Aviva handled most of the myeloma treatment bills, but they would sometimes refuse to pay certain bills which would involve long conversations with them to sort out payment. These are not the sort of conversations you want when you are feeling poorly and tired after a stem cell transplant. I didn’t realise Aviva set a maximum spend for some procedures and the consultant inserting the line apparently charged over their recommended rate, which again took time sort out. Aviva also restricted certain drugs to a six month treatment period. They would not fund thalidomide or Zometa for over six months.
In order to continue to receive monthly Zometa for the recommended period, I had to change from the private to NHS treatment. I have found the NHS treatment to be outstanding. My consultant is prepared to answer any questions and dedicate sufficient time to regular consultations. They review your treatment using the multi-disciplinary approach and all treatment is carried out by the team of nurses and staff which you have developed good working relationships with over the course of your treatment and follow up appointments.
However, the private health insurance can sometimes provide drugs which are not available for funding under the NHS. You are the only ones who can decide on which way to move forward with your treatment, just ask the appropriate questions to your insurer as to whether they might restrict cover on certain drugs or treatment and ask your consultant where all of your treatment will be carried out.
All the best with your treatment.
Jan x
Hi Jean,
I still remember the burning and sharp pain associated with shingles when I suffered an outbreak of the virus all down the right hand side of my body a couple of years ago. Most of my right arm was covered in a mess of large red blistering, itchy patches. I was lucky in that the pain only lasted for around 6 weeks, but I struggled with my appetite and fatigue, losing over a stone in weight. My light chains increased by over 400, but after recovering from shingles my light chains reduced by 200 over the following 2 to 3 months. I have to be careful using ibuprofen because it easily irritates the lining of my stomach causing severe abdominal pain. I was already prescribed tramadol and fentanyl patches for my myeloma which helped with the pain.
I hope Frank feels a lot better soon.
Jan x
Hi Stephen
After 4 cycles of CDT and a SCT, my light chains reduced from 2,200 to just below 20. It’s been almost four years next month since I was diagnosed in March 2010 with myeloma and over these years, my light chains have behaved unpredictably sometimes increasing, sometimes staying at a plateau for months, sometimes decreasing, but now they have finally reached the consultant’s target of 1000 which is the trigger for further investigations and the start of my second round of treatment depending on bone marrow results.
Therefore, my answer to you is yes you can look forward to a lengthy period of remission with your PP at a plateau of 5. It just depends on when and at what rate your PP levels start to rise. Each patient responds to treatment so differently, therefore it’s so difficult to predict length of remission periods. Just carry on enjoying your period of remission and long may it continue.
Regards
Jan W x
Hi Eve,
When I read your comments, like others have mentioned, I just didn’t know what to say. I am so sorry this has happened. I’m really sad for you both. It must be so difficult for the both of you trying to live relatively normal lives in such an abnormal situation. I hope Slim is able to live each day as well as he can to best fulfil his wishes. You have such a hard job of caring and supporting Slim through the last stages of his roller coaster journey as well as dealing with your own emotions.
I know I previously mentioned the benefits of remembering and recording your memories of your life spent together and in this week’s Mail on Sunday, there was an interesting article written by a lady who has recently developed a free app entitled, RecordMeNow. Through personal experience and extensive research, she found whatever the circumstances of the death, relatives repeatedly confided an aching need to listen to the person’s voice and be told how they were loved and cherished. She found they also wanted insights to some basic questions, e.g. what makes you happy/sad/angry, what makes you proud, together with thoughts and advice to loved ones. Most memories passed onto family are of saintly qualities, whereas relatives wanted to know the good, bad and the ugly. The app provides a suggested 100 questions which serve as prompts for memories and advice aimed at providing a joyful essence of life, together with a keepsake for future generations. I thought you might be interested in taking a look at the RecordMeNow app.
Wishing you well.
Jan x
Hi Scott
Yes, I’m still taking my daily curcumin and I still believe it’s helped me over the past three years of remission. After a bad cold and chest infection last Christmas, my light chains appear to have increased at a much steadier rate over the last year. Although that was my only cold for three years, with no other infections, which is good going especially as my neuts always remain low at around 1.3. Prior to diagnosis with myeloma, I regularly suffered 3 – 4 colds per year. However, I was working with very young kids on a daily basis and they quite happily spread their coughs and colds to those around them!
I hope the results of your bone marrow biopsy are good.
All the best. Jan W
Hi Tom
I’m so sorry to hear your sad news. It must be such a shock, disappointment and big concern about what the next round of treatment will bring. Fortunately, there appears to be quite a few treatment options available for first remission including some clinical trials, Velcade and the possibility of a second SCT. Apparently the results of the Myeloma X trial are due to be published which shows the benefits of patients undergoing a second SCT as part of their first relapse treatment.
I’m following closely behind you Tom. I’ve just achieved over three years of remission, but with my light chains continuing to slowly rise to 880, my consultant wants a BMB early next year when my readings are predicted to reach 1000. I had expected to have started treatment earlier this year, but fortunately during the summer and autumn, I had a couple of readings when my light chains decreased which totally confused everyone. Even though my myeloma is returning, my body feels fine with no increased pain or fatigue. However my hot flushes have increased, which is what happened a few years prior to my diagnosis with myeloma. I thought I was going through a bad case of the menopause. Hubby has now got used to the windows being wide open in the bedroom during the winter months and he’s happier the heating bills are much lower as I keep turning down the thermostat! It’s a good job the regular blood tests are available to let us know what is happening within our bodies before any serious bone damage occurs.
I hope your next round of treatment is successful with minimal side effects. As you say, onwards and upwards.
All the best.
Love Jan W
It's so sad to read Dai has lost his battle against myeloma, especially when he had just had the chance to try a new promising drug. He had such a natural writing talent, which he ably used when offering such wise words of wisdom, knowledge, support and hope to members on the forum. I'm pleased he had the opportunity to spend some time with the people he loved during his recent farewell party. It's comforting to read he passed in comfort, peace and dignity with his family surrounding him. He will be sadly missed.
Love Jan x
Hi Paul
So sorry to hear your news.
As regards your question about a second SCT, this issue was raised at the Birmingham myeloma info day last weekend. Apparently the results are being discussed within the medical profession about the recent myeloma x trial, but not yet published, which looked at whether a second SCT was a effective treatment method for those patients relapsing after their first SCT. The initial results look good, which means more people will be offered a second SCT depending on the success of their first SCT and whether they are "fit" enough for a second SCT. Unfortunately no further information about remission times was forthcoming, presumably this is because data is probably not available yet from the trial.
Regards
Jan x
Hi Carol
Well I must be the real wimp of the bunch, because it took me a good three months until after my SCT until I had enough energy to walk up and down stairs in the house and a further three months until I could spend a couple of hours up and about without collapsing back to bed feeling exhausted! As Tom states, we all are so different in our recovery process. My consultant estimated myeloma patients usually feel much better three months after SCT.
Regards
Jan x
Hi Lolly
It depends what you actually stated on the form when you replied to the questions on how far Steve could walk without experiencing problems. On my initial application form, I stated 5 to 10 minutes walk at a very slow pace, but did not stipulate the actual distance. My application was originally refused because of the estimated distance I could walk over 5 – 10 minutes as worked out by the council. In the letter of refusal, my local council replied:
The Department of Transport who administer the Blue Badge Scheme stipulate the following, "It is envisaged that badges will generally only be issued to people who are unable to walk, or who are able to walk only with excessive labour and at an extremely slow pace or with excessive pain. They need to show that they should not walk very far because of the danger to their health". In accordance with Department of Transport guidelines individuals who can walk in excess of 80 metres (87.5 yards) and do not demonstrate very considerable difficulty in walking through any other factors are not deemed as eligible.
You can reapply, ensuring you detail any pain medication which Steve is taking, state the actual distance he can walk (you need to measure this!) and if necessary ask your local GP to provide information to support your application. Hope this helps.
Regards
Jan x
Hi
Sorry I can't personally help you with this as I have no experience of the drug. However, if you type Bendamustine into the search engine on this site, you will come up with quite a few comments about this drug by other forum members as well as individuals who have tried the treatment. I remember Dai trying this treatment before his current regime.
Regards Jan
Hi Karen
Good to hear from you. How are you progressing? Is your pain manageable? Are your family coping OK?
Regards
Jan x
Hi Chris
That's great news your consultant is happy about your progress.
It can be a tough and slow recovery process after SCT. I don't think you are worrying too much because it's very hard when you can't eat or drink very much especially when your memories are still quite vivid of being constantly sick. It can take months for your taste buds to recover after chemo. I remember trying to chew meat and getting a metallic taste which was totally unpleasant. Just try to keep an eye on your weight and if your weight keeps dropping or you can't keep your liquids down, then speak to your GP about possible help with protein supplements or other dietary help.
Regards
Jan x
Hi Susan
When my hair dropped out after SCT, it went baby blonde (apparently like the colour when I was under five) and then that dropped out again six weeks later to be replaced by a very thick dark frumpy grey colour. Initially, my hair was so thick that it stood up on end for the first couple of inches, which was quite a sight to behold!
I tried living with the dark grey colour for nearly a year, but I just couldn't get used to being totally grey. If the colour had grown back light silver grey, I would have been much happier. Prior to SCT, I was about 40% grey, together with a dark blonde. Over the past couple of years, I've tried various permanent colours for the grey. Nice and Easy colours well, but it takes a good 40 minutes on grey hair with a very strong smell of ammonia. I then swopped to their 10 minute treatment, Clairol Perfect 10, which colours well but unfortunately there aren't many colours available in blonde.
A couple of months ago, I was attracted to Garnier's Olia natural colour treatment and purchased their sandy blonde shade. The colour took well on my hair, covering the grey as promised, but the shade turned out nothing like sandy blonde – more like a dull brown. I went out and purchased a highlighter kit to try to lighten the colour.
Hope you get some good results with your chosen colour.
Regards
Jan x
