Hi Chris
It's definitely not pleasant being sick and unable to eat after your SCT. You already feel so low, without much energy after an SCT and being constantly sick is not a good feeling especially when it lasts for days and days. I know how you felt because although I had three different anti sickness drugs, for ten days after my SCT I still hadn't managed to eat or hardly drink anything. I was hooked up to constant fluids and minerals, but just about avoided being fed by tube because I managed to keep down a couple of spoons of custard on the day before my release! I also agreed to be monitored by a dietician from the hospital in order to keep on eye on my weight loss and food intake. My weight dropped during 4 cycles of chemo and again after SCT from just over ten stone to under six stone mainly due to constant nausea and sickness throughout treatment.
When ever I mention to my consultant about how poorly I felt due to the sickness following SCT, he just states the drugs have advanced so much in this area over the past few years that most patients tend not to suffer. But your post makes me realise it's still a major problem with some patients. It took me a good three months after my SCT before I could begin to consider eating some meals with the rest of the family. I tended to eat little amounts of food which I would fancy eating, such as cheese on toast, ice cream, yogurts, biscuits, egg on toast, etc. Quite often I couldn't eat very much so the GP prescribed liquid drinks to help boost my total food intake which I used for around 3 – 5 months post SCT.
Your usual appetite will gradually return, but you need to give it time for your body to recover from all of those toxic drugs. Just take each day as it comes and try different food in small amounts throughout the day. I still cannot manage to eat a large amount of food at one meal time. When I visited my dentist a few weeks ago, he told me that the state of my gums had only just recovered three years since my SCT.
Hope you feel better soon.
Regards Jan x
Hi Mavis
I know exactly how you feel about your itching. The constant scratching all over your body can drive you crazy. I've been on Fentanyl pain killer patches for my bone pain for the last three years, but over the past few months I've developed an allergic reaction to the glue used in the patches which causes me to continuously itch during the first night of a new patch i.e. every third night. Apparently it's a common side effect from the pain killer which causes some people to have to cease with the patches. I've tried to reduce the dose, but then I have bad drug withdrawal symptoms as well as itching. I've also tried an anti-histamine, but I become so sleepy for 18 hours as well as itchy.
In one FDA revlimid survey on the net, the patients with symptoms of high blood pressure, high cholesterol and/or rheumatoid arthritis were prone to itching when taking the drug, but unfortunately there were no tips on how to tackle the itching. On one myeloma blog, an individual has tried Benadryl allergy relief capsules for the itching with some success.
Unfortunately, we seem have a family history of allergic reactions to certain products and drugs. My mom ended up in A&E after just stepping into a bath using Radox for the first time when her body started to swell up. I reacted the same to some half cooked prawns many years ago. Both my mom and my son have suffered with eczema for many years and to stop itching we have tried a number of products such as tea tree oil, vinegar, aloe vera cream/gels, calamine, a topical steroid cream, non perfumed bar soap such as sensitive rather than gel soap, a mild washing product such as Fairy, stopped using perfumes, reduced caffeine, reducing sugar, cold showers before bed, oatmeal baths, cotton sheets/clothing, cool bedroom … some have helped but others haven't.
It's worth having a discussion with a good local pharmacist due to their excellent knowledge about drugs and their side effects for suggestions on the most appropriate anti-histamine tablet, topical steroid cream or other remedies. Hope you manage to reduce the itching.
All the best.
Jan x
Let me know how it goes. Just watch out for the curcumin stains on your fingers or clothes if you handle the tablets. I have to tip the tablets onto a saucer and use a spoon to handle them, otherwise it takes ages to remove the stains from your fingers and clothes. Jan x
Hi Lolly
I think it's supposed to be a good sign when you experience pain in your joints and bones after the GCSF injections because it shows there are changes happening in the bone marrow environment as the drug stimulates the stem cells to leave the bone marrow and enter the bloodstream where they can be collected for use in Steve's transplant.
When I received my GCSF injections I was always warned I might experience bone pain, headache or flu like symptoms and to take some pain killers, or a hot bath or use a hot water bottle/pad for pain relief. However, I didn't experience any side effects which probably explained why my first lot of injections didn't work and it took a further few weeks of injections before I was ready for harvesting.
Hopefully the pain Steve is experiencing is a good sign his body is responding well and producing sufficient stem cells ready to be harvested next week. I hope all goes well. Don't forget to take some drinks (with straws) and food for him because it's a long time when you are connected to the harvesting machine and unable to move.
Regards
Jan x
Hi Scott,
I had zometa for six months without experiencing any side effects and then I had a gap of six months before I restarted the infusions. On my first time I received the zometa after the gap of six months, I experienced flu symptoms for three to four days after the treatment. It's never happened again, although for the next three to four infusions I felt tired for a couple of days afterwards, but now I have no side effects after receiving the drug.
When I suffered with the flu symptoms, I discussed with my consultant increasing the time of the infusion which currently takes 20 – 30 minutes, but he told me to wait for my first three infusions to see whether the side effects continued once my body became more used to the drug. Hopefully, your side effects should only last for the initial dose.
My local hospital now deals with a much larger amount of cancer patients receiving Zometa, including breast and prostrate cancer patients, and because of this increased experience in dealing with the drug, they now actively warn patients of the flu side effects following the first infusion – which is what should happen across the UK.
I believe, Heartlands hospital in the Midlands now has a specific afternoon allocated specifically for Zometa infusions which is probably a much better way of ensuring patients do not have to wait a long time for their short infusions. Currently at my hospital, I wait anything up to two hours before a chair/nurse becomes available for my Zometa infusion due to the busy hospital ward having to cope with such a large amount of cancer patients undergoing a variety of treatments which can obviously last for much longer periods than Zometa or line flushes.
Regards
Jan
Hi Scott,
You should find Margaret's website under margaret.healthblogs.org/ There is a wealth of information about curcumin studies which have been carried out in various countries, together with a wide variety of other interesting topics such as omega 3, vitamin D, quercetin, sugar, diet, aspirin, etc. If you have a look at her curcumin side effects and health warning page, it details when you should not consider taking curcumin such as if you are suffering with gallstones, taking blood thinning drugs, have a stomach ulcer, undergoing chemotherapy, if you are considering pregnancy, etc.
I started with her suggested curcumin protocol of taking one gram for the first week, two gram the second week, building up to 6 – 8 gram per day. Apparently you should look for a brand which contains at least 95% curcuminoids to be effective either with or without BioPerine (an extract of black pepper). You can buy curcumin in 500 mg or 1000 mg versions. In total, I take 8 tablets of 1000 mg per day with the combined bioperine (which is supposed to promote absorption) in one dose on an empty stomach during the evening. On the downside it's a large amount of tablets to take per day and costly at around £80 a month. Some people cannot tolerate such a high amount because of bowel distress or other side effects such as rashes and hives, which is why the suggested gentle build up approach to the daily regime.
I don't think you ever stop worrying about how long a remission you will achieve after undergoing your current treatment. Fingers crossed, the SCT will work for you and provide a good remission period. Hopefully one day research will be able to tell us why certain drugs are resistant to stopping myeloma progressing in certain individuals and doctors will be able to prescribe a more individualised approach to our treatment rather than the current "one size fits all" with our prescribed first, second and third line recommended drugs.
Regards
Jan
Hi Eve
So sorry to hear Slim is in hospital. Hopefully his potassium levels will improve with his current treatment in hospital. After my four cycles of CDT, I spent five days in hospital being treated for low blood counts and poor potassium/magnesium levels. Again after my SCT, I had many bags of potassium and magnesium to improve the levels, but nobody explained why the levels reduce so quickly or why the body begins to retain better levels after treatment. I presume our bodies are not absorbing the required levels whilst we are taking the huge amount of cancer drugs or the kidneys are excreting the magnesium from our bodies. Hopefully, Slim's doctors will provide the explanation.
Regards Jan x
Hi Scott,
Six months prior to my diagnosis of myeloma I suffered 3 bad colds which unusually developed chest infections and took ages to recover from the cough. During my 4 cycles of CDT, I caught another cold from hubby which again developed a chest infection and I felt really rough for six weeks. After going through SCT, I was worried about catching further colds during the recovery period so I started researching on the net about possible supplements.
I was attracted to curcumin because of it's reported anti bacteria and anti virus properties. Also Margaret's curcumin blog is very interesting which details lots of worldwide research on curcumin and cancer, in particular myeloma/MGUS and light chains. Before taking the supplement, like Dai, I discussed it with my consultants and both were not impressed with the idea, suggesting further research needs to be undertaken. But both had myeloma patients who were extremely positive about curcumin.
I started taking curcumin three months after my SCT, gradually building up the daily dose in order for my body to become used to the supplement. (On Margaret's blog she provides information about recommended daily doseage.) I am really pleased I have achieved three years of remission with just one cold virus last Christmas and one attack of shingles. On both occasions, my light chains increased by 200 whilst my body was tackling the bacteria/virus. However, after the shingles, unfortunately the light chains did not reduce to their original level.
I buy my supply of Doctor's Best curcumin from Bodykind in the UK, but because of the high monthly cost I was interested to find the same product available in America at half the price. Although the packaging of the product was the same as the UK, the tablets did not have the usual smell or leave the yellow residue on your fingers when handling them. After chopping up the tablets, I soon realised I had purchased a fake supplement. Interesting, a month after taking the fake curcumin supplement from America, I suffered with the outbreak of shingles. Was this a coincidence, I will never know but it did convince me to continue taking the supplement from a recognised supplier in the UK!
Regards Jan
Hi Scott
I would ask your consultant for some more information about your fractures, especially with your height loss of 2". As Eve has suggested, try to obtain a copy of your MRI report which will show the extent of the bone disease including fractures and lesions. Apparently, I have quite a few lesions in my skull, thigh and tops of arms. You are right, steroids can help decrease inflammation and pain. If you find you cannot manage your pain, then you can ask to be referred to a pain specialist. Yes, I've been prescribed Ad Cal (calcium and Vitamin D)by my GP for the past two years. However, my consultant doesn't appear to be bothered whether I take this supplement.
According to Myeloma UK some 60 – 70% of patients have evidence of bone disease at diagnosis. At least there are now bisphosphonate drugs (e.g. zometa) available to help stop the breakdown of bone, reduce bone pain and stop further bone fractions. I feel very fortunate that my bone destruction did not result in complete lack of mobility and following treatment most of my pain can be controlled by pain medication, avoiding lifting and learning to rest when the pain increases with activity.
Regards
Jan
Hi Scott
Prior to the collapse of my three vertebrae, I suffered about a month of severe pain in my ribs and back, together with the very painful spasms which you have experienced. In order to avoid putting further pressure on your bones, my consultant advised me to avoid lifting any items of more than a couple of pounds in weight
My vertebrae collapsed six weeks prior to my diagnosis resulting in a height loss of around 3". Following the collapse, I spent a good 10 days in bed hardly able to move and then used a walking stick to help with mobility throughout the four cycles of CDT and a wheelchair during stem cell transplant. You are fortunate to have an adjustable bed because it is painful to try to lie flat and when getting up out of bed then straightening your body. My most comfortable sitting position used to be propped up with four pillows in bed, because hard chairs were too uncomfortable and getting out of low soft chairs was painful. We had to change our soft settee and throw out our dining table/chairs because I couldn't use them with the pain.
I have a curve in the top of my back and my ribs are a lot wider below my chest where the bones have collapsed together. For the constant pain in my back and ribs, my consultant prescribed Fentanyl 50 mcg slow release pain patches which each last for three days, together with up to eight tablets of Tramadol 50 mg which have helped considerably with the pain. I started on the recommended monthly bone enhancing drug Zometa after my stem cell transplant and this has also helped to gradually reduce the bone pain. I still find sitting down on hard chairs uncomfortable and my back aches if I stand for too long.
It took many months after the stem cell transplant, before I was able to walk without the walking stick and my mobility was quite limited due to the constant back and bone pain. It's taken me just over two years before I can comfortably lie on either side in bed, but I miss being able to sleep face down.
Prior to my CDT, my consultant mentioned after my SCT if I still suffered from back pain, I might consider kyphoplasty where a balloon is inserted into the fractured bone through a hollow needle to create a cavity or space and a cement mixture is injected into the space once the balloon is removed. Several other members on the forum have successfully had this treatment with good results. (You can search their posts under the heading of kyphoplasty or vertebroplasty.) I know this procedure is used for compression fractures, but you would need to discuss this process for your fractures with your consultant to see whether it might be of benefit for you.
Regards Jan
Hi Scott,
You have certainly had a very eventful three months leading up to the time of your diagnosis with myeloma. Unfortunately with this cancer, it appears to take many months of visiting doctors and specialists before the final diagnosis of myeloma. I should think you are extremely relieved to find out what was causing your back pain, but totally overwhelmed following your unexpected diagnosis of cancer and the amount of drugs which you have to take during your cycles of treatment.
It does get less emotional once you have had time find out more information about the cancer, gradually accept and adjust to the situation, go through the treatment and hopefully start a long period of remission. However, as the patient I think we tend under estimate the stress on our partners, children, relatives and friends. My husband found it difficult to support and care for me whilst going through treatment, when at the same time he had to take on most of the household chores, deal with family issues and go to work on a full time basis. As other forum members have advised, you do need to talk to each other and help each other through this stage of your lives.
My two sons were about to complete their AS and A level exams when I was diagnosed with myeloma in March 2010, aged 52 and undergoing 4 cycles of CDT from April to July. Both my husband and myself thought they were handling the situation well, but it took us ages to realise both suffered with their studies and exams due to their inability to concentrate or focus on their revision in April/May whilst worrying about my health. With hindsight, I wish I had discussed my cancer earlier with their teachers at school in order that they could be aware of the family issues and put into place regular monitoring/support to identify any difficulties with their academic progress and/or any behavioural issues.
The side effects of CDT can start to kick in after a few cycles, but remember the majority are short lived and will disappear once you have completed treatment. Just listen to your body and rest,relax or sleep more if you feel you need to take things easy.
Regards Jan
Hi Maureen
It sounds like you had a wonderful break in Nice with your daughter. Before our kids were born, we spent 10 years of our holidays touring around the South of France coastline from Italy to Spain. We have some really happy memories, especially the markets, French bread and beautiful coastal roads. Eze is a great spot with terrific scenery. We visited Monte Carlo a couple of times and on one occasion were not allowed into the casino because of wearing shorts. It's taken us another 30 years before we have visited another casino in Tenerife this year!
You must be happy with Ian's progress and improved mobility.
Regards Jan x
Hi Dai
It's fascinating to read the details about your Romany gipsy background. Unfortunately, I don't know much about my grandmother, apart from the fact that she belonged to the Lee Romany tribe living around Wales and Blackpool area in the early 1900's. My grandmother used to make a living from the traditional fortune telling, skills which my mom certainly inherited. Perhaps, I inherited my anaemia which I have problems with since age 11. I'll certainly have a look at the details which you mention. Many thanks for the info.
Regards Jan
Hi Eve
I just googled the Whispa scooter – it looks very neat and versatile. My aunt rented her mobility scooter for over five years from the local mobility shop at our shopping centre. She enjoyed the freedom which it provided to be able to motor around the local parks and shops, although she often used to complain that the shoppers did not appear to readily give her priority and move out of her way!
I think Slim's specialist is being very thorough when requesting a full body x ray, especially as his last BMB readings were not particularly clear. At least you will be able to know whether there are any further hot spots in his bones. I would like to know whether my various lesions have remained the same or increased.
With my light chain numbers steadily increasing over the last three years to around 800, I am realistic knowing my next treatment is rapidly approaching. However, sometimes my light chain figures have been erratic, therefore until I actually reach the figure of 1,000 my consultant states there is no reason to discuss the actual treatment which will be recommended.
You are right in that I worry more about the family and how my cancer has affected their lives. My husband was particularly stressed and anxious during my last treatment, but as the carer it fell on him to look after the family and care for me. He was completely overworked, overwhelmed and exhausted during my treatment.
Apologies to Vanessa for taking over your post, I should have started a new thread.
Love Jan x
Hi Eve
Many thanks for the compliment. We've just returned from a family holiday in sunny Tenerife before one son returns to uni for his final year and the other starts his first graduate job away from home. We booked the holiday at the last minute because my light chain results are slowly increasing and are expected to rise to almost 1,000 before Christmas which will mean the start of more treatment.
Have you managed to purchase the scooter for Slim? x
