It certainly is worrying when your myeloma levels start to increase over a short period, but you are definitely right in that there are now many more treatments available than since we were diagnosed and many more in development, which is so hopeful for the future. When you get the results of your CT scan, if possible see whether you…[Read more]

I hope the dental hygienist goes OK tomorrow for you.

Many thanks for your kind wishes about coping with my new treatment. If you’d asked me yesterday then I’d have said very badly due to 24 hrs of harsh withdrawal symptoms from 40 mg of high dose steroids, which was quite a shock to my system after only experiencing 20 mg of…[Read more]

Mavis, you must be very relieved to know that a thorough check up of what’s happening beneath your ulcer has been carried out so quickly and efficiently by the NHS. Let’s hope a good plan of action will be drawn up for proper treatment to help you maintain the good fit and comfort of your dentures.

Reading through some of…[Read more]

It’s good to read that you have remained in remission since 2011. Hopefully your PPs will only rise very slowly and it will be sometime before you require further treatment. I had four cycles of CDT in 2010 followed by an SCT, but I relapsed in 2015 requiring 8 cycles of VCD with a second SCT in Sept 2016. My light chains have…[Read more]

I had Plerixafor the evening prior to the first day of my second Stem Cell harvesting, as well as the following evening prior to day 2 of the harvesting. I experienced some really weird hallucinations during the night of the harvesting. I raised my concern with the nurses, but apparently they had not had any other patients experiencing…[Read more]

I certainly know why you are not looking forward to your second SCT, but hopefully the process will provide you with a good period of remission. I found my second SCT in September 2016 far easier as regards side effects, together with a quicker recovery period afterwards.

I am sorry to hear your peripheral neuropathy is not improving…[Read more]

I hope your peripheral neuropathy (PN) starts to reduce now that you have stopped Velcade and currently on Revlimid. My PN has certainly improved since my 8 cycles of VCD finished in September 2016, resulting in hardly any symptoms during the summer months of 2017. However my PN appears to be triggered when the weather is cold, where…[Read more]

A really worrying time for both of you. What were Ian’s light chains when he was originally diagnosed? I just wondered whether they were higher than 5000? I would certainly try to find out more about Ian’s genetic make-up of his myeloma in order to try to determine whether there is any available evidence on Daratumumbab or…[Read more]

When I first received Zometa in 2010, I was hardly given any IV fluids prior or after Zometa which did contribute to certain side effects of dizziness and headache for a two…[Read more]

There have been quite a few articles in the press over the summer months about how travel insurance companies are making it more difficult and costly for cancer patients to find suitable cover for their holidays, even when some cancer patients have been in remission for long periods.

I certainly had more difficultly this year finding…[Read more]

Did you get the chance to listen to Radio 4’s Food programme today on Tumeric (Curcumin is an extract of the spice Tumeric), which was presented by Sheila Dillon, a myeloma patient and covered turmeric’s culinary use, history and the latest radical findings about turmeric, together with details of a myeloma patient who has taken…[Read more]

I can understand your concern about whether further treatment is required with your paraprotein levels rising over the past two years. However if you do not appear to have any symptoms or organ compromise or your paraprotein levels are not rapidly rising, then it’s usually normal to be closely monitored without treatment.

It’s often…[Read more]

Well done for achieving six years of remission following your stem cell transplant. I can understand your concerns about mucositis which causes so much pain, discomfort and misery, because similar to your experience I also had oral mucositis during my first Sct in 2010. My mouth was full of ulcers, which made speaking, swallowing and…[Read more]

You both must be so concerned and anxious at the delay in the date for the SCT. However your husband’s body needs to be free from any virus or infection when he begins the SCT, because the whole process with the high dose chemotherapy can be quite harsh on your body. I was in the same position last year when my second SCT was planned for the…[Read more]

During my first cycle of Vcd, I also had a red sunburnt face which then progressed to red spots on my trunk/legs with large amounts of skin peeling off from my hands and feet. My bloods at the end of cycle one showed an infection and I was admitted into hospital for monitoring. Like Teresa’s husband, the antibiotic Co-Trimoxazole was…[Read more]

You are bound to feel upset and down at the moment with everything so new to you and no doubt with so many questions going around in your mind. I still remember the shock, fear and disbelief when I was told I had myeloma on my 53rd birthday in 2010. It’s a very difficult and stressful time. Initially I spent months crying, feeling sad and…[Read more]

I know what you mean about the length of time it takes to receive your chemo in hospital. When I was visiting hospital twice a week for the Velcade injection, I usually had to wait 2 to 3 hours to receive the injection, which combined with a two hour return journey made the whole day written off for one injection. I believe some…[Read more]

Fortunately most myeloma medications and treatments do not cause hair loss. During my 4 cycles of CDT treatment, my hair remained as usual, but towards the end of my 8 cycles of VCD treatment my normal thick hair did gradually become slightly thinner.

Unfortunately almost the majority of myeloma patients undergoing a stem cell…[Read more]

I had 8 cycles of VCD last year prior to my second stem cell transplant. My light chains were 1900 when I relapsed in Oct 2015, but decreased to around 190 by the time end of cycle 8, further reducing to 44 after the transplant in September 2016. For me the hardest part of the VCD treatment was nausea, fatigue, sleepless nights with…[Read more]

That’s really good news you have only experienced only a small reaction to your first infusion of Daratumumab and your second infusion wasn’t so bad. It’s always worrying when you start a new treatment because you haven’t a clue as to how your body will react to the drugs and you have to wait for the first few sets of blood tests for…[Read more]

I am sorry to read about your side effects to the chemotherapy, which unfortunately can seem to take over your daily life and interfere with daily activities. You might find the next few cycles get easier or they could get progressively more difficult. For this reason, I would suggest you keep a weekly diary and write down the days you don’t…[Read more]

You’ve done so well on 40 cycles of Pomalidomide which has managed to keep your myeloma under control. I hope the MUK8 trial works just as well for you, with minimal side effects. It’s certainly discouraging news this week that Daratumumab hasn’t been approved by NICE, especially after it was fast tracked in Europe. It’s so frustrating…[Read more]

It’s so good to see you are coping well with VTD and excellent news that your myeloma light chains have significantly reduced. You must be pleased with the results so far.

Your pins and needles are more than likely to be the start of peripheral neuropathy (PN) as a side effect to Velcade and Thalidomide, which you need to discuss with…[Read more]

Because we all react so differently to the various drugs, it is very difficult to predict the actual length of your treatment period or the specific number of treatment cycles you will have to undertake. It all depends on how well you respond to the chemotherapy and your tolerability to the drugs.

My first treatment in 2010 consisted…[Read more]

I had my first Sct in August 2010 after four cycles of cyclophosphamide, dexamethasone and thalidomide (Cdt) which gave me a good five years of drug free remission until my first relapse in the autumn of 2015, when I completed 8 cycles of velcade, dexamethasone and cyclophosphamide (Vcd) followed by a second Sct in September 2016.…[Read more]

If you have a look at the Myeloma News section on this site, there’s an article released on the 23 November 2015 stating Imnovid (Pomalidomide) is now available for myeloma patients in England who have received at least three prior treatments including Velcade and Revlimid, and whose myeloma progressed while taking their last treatment.…[Read more]

I’m sorry to read that you are having to start treatment again after your recent SCT. You’re certainly not expecting too much as regards remission time, because when we all go through treatment we always hope for as long a period as possible before the myeloma becomes active again. Unfortunately the amount of time we remain in…[Read more]

Great news about your progress during your VDT and sct, especially as your side effects appeared minimal. Hopefully your myeloma levels are also good? You sound as though you are recovering well to be undertaking mile walks.

I remember my first infusion of Zometa causing me flu like symptoms with aching bones, but these side effects…[Read more]

Brian: Your myeloma levels have certainly reduced significantly following your treatment. You must be so relieved and hopefully they continue to improve in the coming months. My lambda levels were 1900 at the start of VCD in Oct 2015 (all other levels normal) reducing after 8 cycles to the achieved 90% reduction target to…[Read more]

Many thanks for your reply. I”ll certainly discuss again with my Maxillofacial doctor about shaving off the exposed bone growth, but it might have to wait some months to see whether my current bone growth stops, which will also give my immunity levels chance to improve after my recent second sct.

Jan

I found your post to be very interesting due to the similarities which I am facing with exposed bone growth in my mouth due to Zometa. My maxillofacial consultant is reluctant to remove my exposed bone whilst it is causing no problems, because he feels the bone might be still growing and therefore he would rather wait and…[Read more]

I completely agree that the side effects of treatment vary depending on the drugs used and everyone reacts in different ways. We all have to individually decide on the best way forward after taking into account all of the available advice and information which we require to make a decision. As you state Brian, it’s a…[Read more]

I’m sorry to hear about your husband’s experience with the Maxillofacial clinic and having to wait three months for NHS funding. Hopefully all of his dental work has been successful and he continues to be pain free without any further dental problems.

I’m not sure whether Pamidronate is any different to Zometa as regards the side…[Read more]

Since it’s been a little while since your posts, therefore I’m not sure whether you have since changed your treatment to Vtd or whether you have made a decision about a sct.

I was diagnosed in 2010 aged 53 and went through 4 cycles of cdt followed by a sct. I didn’t question the treatment plan, because I found the diagnosis as a…[Read more]

I thought your newspaper article was good and certainly helped raise awareness of myeloma. I hope your recent operations on your head have managed to remove the necessary suspicious areas and that your scalp has recovered well. Have all your results come back OK? You were on my mind when my 97 year old dad spent three hours last week at…[Read more]

I’ve been on Zometa for five years without any side effects and actually have reduced back/rib pain from the drug.

After relapsing in Oct 2015, I commenced VCD for eight cycles and in April 2016 I noticed a possible ulcer in my upper palette. After visiting the dentist, it appears I have some bone or tooth growth erupting through the…[Read more]

It’s good to read you have been having bone strengthening infusions for the last eight years, which have also helped to maintain your myeloma levels. I hope your levels remain low for a long time to come.

The extra bone in my upper pallet might be tooth rather than bone growth. However the amount of bone/tooth being exposed is slowly…[Read more]

You have both certainly been through a lot over the past 14 years. I think it’s terrific news that your husband gained 14 years of remission from his transplant, but can totally understand your shock when the cancer has returned especially when you thought the cancer was curable. I would suggest you find a specialist myeloma consultant to…[Read more]

I…[Read more]

In addition to the useful information on this site, there’s also some interesting forum posts on The Myeloma Beacon website where individual myeloma patients have outlined their personal sct experiences.

Depending on your hospital’s policy on sct procedures, you might find some minor differences such as: * The high dose chemo of…[Read more]

It’s worth mentioning the pain to your consultant in order to ensure there is no further lesions or fractures. Perhaps pain medication is necessary for a period of time to help relieve the pain. However, it might just take a little while to improve especially after what your husband’s body has been through during the sct process.

After…[Read more]

Hope you have a great, relaxing time. The sunshine will certainly boost your vitamin D levels. Hopefully your current treatment will still be able to contain your myeloma levels.

Jan

I’ll be thinking of Ian on the 17 May at his next consultant’s visit, because my next visit is the 16 May. You always tend to worry a little before these visits whilst you wait for your myeloma levels. Hopefully Ian’s light chain levels will remain stable for a long time yet.

In preparation for my sct, I visited my dentist for a…[Read more]