[HelenParticipant]

Hi Andy are you better now? I’m languishing here with an awful cold, hoping it doesn’t materialise into anything worse! I’m about to cancel my lunch date and head back to bed- I hate feeling ill!
I’m on cycle 12 now and I’m still ok on it
Love Helen

[janwParticipant]

Hello Helen

I really appreciate your heartfelt good wishes, especially as you fully understand the variety of emotions and side effects which you can experience when approaching and going through relapse treatments. It’s good to read your news that pomalidomide is working for you. Long may this continue.

Approaching a new drug regime is certainly tough when you are unsure about how your body will react to the combination and toxicity of so many different drugs and whether peripheral neuropathy will be an issue. During my first line CDT and SCT treatment in 2010, the cyclophosphamide caused me constant nausea, sickness and sometimes inability to drink fluids despite trying four different types of anti-sickness drugs. However towards the end of my treatment, the doctors tried a new anti-sickness drug which worked well and has been prescribed for me this time around by my consultant, which is such a relief.

On the positive side, I thought my consultant handled and delivered the news about my relapse extremely well. During the consultation, I never felt rushed and he fully answered my questions, discussed the possible side effects of Velcade and produced a detailed sheet with my drug regime mapped out for me to follow on a daily basis. Disappointing I live too far from the hospital to be eligible for district nurses to visit me at home to administer the Velcade injections. It takes me around an hour to travel the 20 miles to the hospital, followed by the usual wait for treatment, which is OK when you are feeling fine but exhausting when on chemo. Apparently fatigue is a common side effect of Velcade, which should be interesting especially as I still suffer with fatigue following my initial treatment. I’ll keep my fingers crossed and hope, like you experienced, the side effects get better with time. Otherwise with any more symptoms of fatigue I would be better off hibernating over the coming winter months!

I also signed the petition against the move with withdraw blood cancer drugs from the cancer drug fund. It was also worrying to read this week that the approval decision on Panobinostat has been delayed for England and Wales until October, in order to allow further information to be produced as to whether the clinical benefits of the drug justify the costs to the NHS. This drug has already been approved by America and Europe. It’s so frustrating when the rest of Europe can approve and afford to pay for these new cancer drugs, but not England. Perhaps we have European rights to become health tourists in another European country?

I hope your son manages to find work soon.

Love Jan x

[HelenParticipant]

Hi Jan
I’ve just been reading your post to Maureen and see that you are now starting the Velcade, hope this all goes well, pace yourself with it, the fatigue I find is still very unpredictable. And go for walks with lots of tea stops! I did find it a bit nippy with the pn in the feet but it always settled down with the week off, and if you are on the cyclophosphamide – take the anti sickness drugs in advance of the drug… I found that the best move. As for hibernating… Well it is winter! It’s allowed! Let’s hope it goes smoothly.
I’m on the dex tonight so sleepless in Newcastle .. But the pomalidomide continues to give me a pretty good quality of life.. Even managed a few hours in the garden before the weather changed. I really hope someone decides that this drug is an important one for us to have available… But hey what would I know!!
Still no job for the boy! He’s doing percussion gigs where he can, all unpaid so they classify as voluntary work , I just hope something comes along soon for him.
Hope today went well and that you weren’t hanging around too long at the hospital.

Hi Andy
I’ve just read that you are proper poorly. I’m thinking about you and hoping you are on the mend now, let us know how you are when you get back to your screen.
Love Helen

[andygParticipant]

Hi Helen.

As you say I’ve been proper poorly. I’m now recovering. I had pneumonia and sepsis and I think I sailed a bit too close to the wind. As of now I’ve restarted my pomolidimide and Dex. Though the Dex is only at half strength whilst I try and get walking again.  I feel lucky and okay. I’ve got shakey hands and hardly any strength but most importantly I’m doing okay.

I hope everything is progressing nicely with you.

Every day really is a gift I’m grateful for.

Love Andy xx

 

[janwParticipant]

Hi Helen

On Monday I started the first day of my cycle with the cyclophosphamide tablets and Velcade injection. It must be such a shock for our bodies to take so many different types of tablets. The nausea tablets appear to be working during the day, but not the evening. I took the drugs about an hour before taking the cyclophosphamide tablets, but at least I can ask the consultant to consider increasing the dose.

My consultant thinks not many patients have nausea from Velcade. Did the Velcade cause you any sickness problems? The round journey to the hospital, waiting for the injection and returning home took over four hours, which is fine whilst you feel OK but not something I’m looking forward to when the side effects really start to kick in. Hubby is having to take some annual leave every week in order to accompany me and drive me to hospital. The Velcade injection site is reacting with a large golf ball sized red sore patch. Do you know of any effective creams or remedies for the soreness? I woke up on the first night feeling as though I had swallowed some caustic solution with my insides burning, together with hot flushes and nausea, but it only lasted around an hour. Last night the dex kicked in and I only slept a couple of hours and battled the feelings of nausea. Therefore, today has been tiring due to lack of sleep, rather than the fatigue which will no doubt start to increase as I progress through the cycles. I’m hoping for some relief from the growing side effects during the week off from Velcade.

Pomalidomide is working well for you and long may this continue. It’s good to read that you have been able to undertake some work in the garden. We increased the size of our greenhouse last year in order to house the growing number of geranium and fuchsia plants. We moved 20 terracotta pots full of begonia plants from my dad’s house before it was sold last month and all these need to be cleared. Hubby is hoping to sort all of the plants out over the next few weeks.

It must be hard for your son to find work within such a specialist field, but he appears to be happy with his career choice which is so important.

Love Jan

[janwParticipant]

Hi Andy

You have certainly had an extremely tough battle to fight over the last few weeks dealing with both pneumonia and sepsis. Do you know what caused the sepsis? I can’t imagine how poorly you have been whilst undergoing intensive care treatment. Both you and your family must be so relieved that you are now on the road to recovery. Take it easy Andy. I hope your overall health continues to improve over the next few months.

Love Jan

[HelenParticipant]

Hi Jan
I seem to have been absent again, I blame the poor internet signal I am subject to here! I must get this iPad seen to! Number one son has job with apple care now so will get him to fix it I think! The music business is now an evening thing, I think he realises that until he gets his lucky break he has to earn a living somehow!
How is the velcade? Have you had your first results back yet?
I did nothing much about the red lump at all,I was told not to rub it as it might be more irritated so I left it alone, gave it a few days to settle then slapped on the e45 when the skin went very dry, they vanish eventually – some made no marks at all so there may be some operator error! When the were really uncomfortable I found waist bands on trousers pretty sore- Couldn’t wear jeans at all.
I didn’t get sick from the velcade but the cyclophosphamide and dex made me sick, and now on Pom and dex I still get a day or 2 of nausea so take omeprazole and maxolon on a couple of
days a week, it works quite well so I just manage it like this.
Love Helen

[janwParticipant]

Hi Helen

That’s great news about your son managing to obtain a job with apple. I hope he enjoys the work and can also enjoy some music work during evenings/weekends to keep his interest and motivation going to eventually find a career in the music industry. He should be able to help you with your problems accessing the internet. I swopped my computer to an apple MacBook earlier this year on the advice of my younger son who constantly raves about the quickness of the apple operating system. There’s still a lot I have to learn to feel more comfortable using the apple product especially after using Microsoft software for many years.

The good news is that my first cycle of Velcade has managed to reduce my light chains from 1900 to 800. In order to be considered to be able to proceed to a second stem cell transplant, I need to reduce the light chains by 90% to 200 over the course of four to eight cycles of VCD. The treatment has not been without some complications from side effects. The first cycle of the treatment induced a skin rash, raised temperature and raised infection markers resulting in a 24 hour stay in hospital for antibiotic IV treatment. During cycle two, I found out that I had become allergic to the antibiotic co-trimoxazole which was causing the body rash, raised temperature and swollen throat. This is a drug which I took during four cycles of CDT five years ago with no complications, but it just shows you how our body’s reaction to drugs can change. I was relieved that the rash was induced from the antibiotic rather than the velcade, otherwise I would have had to come off Velcade. The PN in my legs and hands which kicked in during cycle one has certainly become more manageable since the Velcade dose was slightly reduced but kept to two injections per week for two weeks of each cycle. Like you experience nausea for a couple of days following cyclophosphamide, I also suffer sickness and vomiting with this drug. I tried so many different nausea drugs during my CDT treatment in 2010, but found EMend to be successful However during Cycle Two of Velcade, the sickness and vomiting took a real hold for 48 hours making it impossible to eat or drink, which certainly brought back bad memories of my first CDT nausea experiences when I lost over 5 stone in weight from being constantly sick. My consultant has increased my EMend medication and included Ondansetron which knocked me out for 12 hours, but at least I managed to get a good night’s sleep on a dex night with this drug. The myeloma nurse did state Ondansetron can cause constipation, which has been the case following just taking one little tablet on Monday. Last night I was wide awake until 5.00 am from dex, which when combined with a new 3 day Fentanyl patch which also makes sleep difficult, certainly makes achieving any usual sleep routines during the dex weeks very challenging.

The second week of each cycle is when the fatigue is the most difficult to manage, but the week off from the Velcade injections does allow you to recover a little which is such a good feeling when you have a few days relief from suffering with various side effects.

I read in yesterday’s Daily Mail about the cost of Pomalidomide treatment which the article suggests is around 115,809 pounds a year per myeloma patient, with Spain managing to negotiate to pay around 90,000 pounds a year for their patient’s treatment. I didn’t realise just how expensive this drug is for the NHS budgets, which is not good news when NICE’s decisions are based on the cost effectiveness of drugs. If the cost is more than 50,000 pounds for each extra year of quality life, then apparently the drug is not funded regardless of whether the drug works, which seems so unfair when drugs have already proved to be effective in clinical trials in providing many years of extra quality life. With the new proposals for Cancer Drugs Fund being put on hold this September because of difficulties of how the fund could be financed in the future, the article states that David Cameron has now demanded the final say on the fate of the fund because access to expensive new drugs is such a highly political issue. The article also states that the Cancer Drugs Fund was never mandated to monitor and keep any records of the thousands of cancer patients who received financial approval to take specific cancer drugs and how well they fared, which does not help future funds being allocated for new drugs when you have no
data as to whether specific cancer drugs were effective in making any difference to patient’s lives. Let’s hope the Government finds some way of financing breakthough cancer drugs next year, including Pomalidamide and other new myeloma treatments waiting to be approved in Europe and the UK.

Love Jan

[andygParticipant]

Hi Jan.

The sepsis was probably caused by the pneumonia. It’s when the bodies immune system goes into overdrive fighting an infection, I think. It can cause damage to your organs and can be fatal when serious as your organs shutdown.

Fortunately I think I’m making good progress along the road to recovery as I’m able to manage to get out a little now and even manage to get to the local for a drink or two.

When I started Pomalidomide we were told at a support group meeting that Pomalidomide was £850 a tablet and Revilimid was £550! That meant Pom was approx. £230,000:00 per annum and Rev was approx. £150,000:00 per annum. I know the prices have dropped since then and my figures are for someone who was on them till they stop working. Hmmm I wonder who fits that criteria? Oh me lol. The figures in Daily Fail are probably an average of all the patients being prescribed the drugs and some will have a lot fewer cycles. I think! Pomalidomide is around the £500:00 a tablet mark now but I’m not sure.

The way it’s going we won’t have access to any of the new drugs unless we fund them ourselves. How would we be able to do that? Not through insurance because they won’t insure existing conditions though healthy people would be able to if they have a crystal ball to be able to see myeloma coming. Hmm insurance paying for treatment that sounds like a private health system.  Are we going to suffer as an example for the government to use for justifying the privatisation of the Nhs?

Every day is a gift.

Andy xx

[HelenParticipant]

Hi Jan
How is the velcade going now? Got the sickness under control yet? It’s not nice trying to balance all the side effects.. I think I feel worse trying to deal with the vagaries of the constipation caused by this and the runs caused by that- so that sometimes I just stay at home because I can’t plan a route that includes enough toilets!!!
I have spent the last 3 months watching my light chains start to rise again… They dropped a bit this week so am still on the pomalidomide thankfully and hope to continue though I have been warned not to get my hopes up! This is not good news but I live in hope.
I’m off Christmas shopping in York on Saturday – my sister is 60 so all my sisters and mum are meeting for lunch in York – this is the first time we have ever had a girls trip out together as my dad always insisted on going everywhere with us!
Al is loving his new job.. I’m hoping this honeymoon time lasts as long as possible, I’d hate him to get bored soon.

Hi Andy are you completely recovered from your pneumonia now? Or is there physio still going on? Have you done your Christmas shopping?

Hope both of you are improved for Christmas
Love helen

[janwParticipant]

Hi Helen

You are awake late this evening? It’s good to hear from you, but I’m so sorry to hear your light chains are increasing which must be so concerning for you. What are your current numbers? Can your current medication be increased or modified? I see panobinostat has just been approved by NICE to be used with velcade and dex for patients with two or more treatments in the UK. I’m also a fan of daily curricumin which appeared to help with my light chain numbers. When I used a dodge supply of curricumin for two months, my numbers increased then decreased after I took my regular supply. But there again it might have been a coincidence.

I’m pleased you can all meet up as a group of girls in your family to celebrate a major birthday. My dad would never let my mom go out on her own with her friends or family, especially when he retired. She suffered with bowel problems following a bug caught on a cruise ship in Egypt in her 60’s and we were always planning shopping visits around loos! My son is also happy in his new teaching job, especially with two week’s hols over Christmas, which is making my other son jealous with his standard 5 weeks annual leave. They are both home over the festivities, with hubby attempting to cook xmas dinner which will not be good news.

Thankfully my light chains are still responding to the velcade and at the end of cycle three they have reached the 90% required reduction, down from 1900 to 182, to be considered for a second sct in the new year. Although, it looks like I will continue on a fifth cycle in order to reduce the light chains as much as possible so that the numbers don’t increase much when I come off treatment for four weeks prior to attempting stem cell collection which was hard work last time with my body not responding to the injections and required an extra two weeks of further drugs. As you say, it’s the side effects of treatment which is the troublesome part of whole process. The fatigue is all consuming, apart from steroid days when the energy kicks in but the sleepless nights take over and mess up my whole body clock. The PN is difficult when the weather is cold and when my fentanyl pain patch starts to wear off on day three. I’m awake for half of that night with pain and restless legs. At present, I have hot baths sometimes twice a day, an electric blanket, leg warmers, bed socks, extra duvet and the heating is cranked up, which has fuelled the battle of the radiator controls with hubby who keeps turning them down. He is dressed in short sleeves and I’m all wrapped up! I haven’t a clue as to whether I’m constipated or have the runs because it keeps changing between the two with steroids causing lots of wind. But at least the nausea is under control with some increased Emend dosage from two tablets to three per week. My muscle weakness in the legs is getting worse and walking up stairs is now a real chore. But, I need to be thankful that the treatment is so far working and that the side effects are mostly temporary. I’ll just have to look for a warmer climate for the legs to recover their warmth.

I hope you have managed to sort out everything for Christmas and managed to purchase some interesting presents from your Christmas market trip. All of my shopping this year has been online, even the food shops. Now I need to wait for steroid days to wrap the presents. Hubby has decorated the house and takes next week off work to clean around before the lads return home.

Love Jan x

[andygParticipant]

Hi Helen,

My lungs are now functioning well. When I went for my Previgen? infusion last week and had my obs done my O2 reading was 99% so that’s good. Physically I’m coming along a bit slower though everyone seems surprised by how quickly I’ve progressed. I’m still doing my exercises and a few more as I’m aiming to build up my fitness as much as I can after being told by the top man in ICU that it was my fitness that probably got me through my little trouble.

Christmas shopping has been done online with the help of Amazon, steroids and the odd beer.

My PPs have risen the past few months we’re hoping it’s a blip due to my being ill and all the drugs they pumped into me. Fortunately they dropped a bit at my last reading hopefully that will continue to happen but it does add to the tension somewhat as you will know.

I hope you have a great day at York and have a successful shopping spree. I personally hate shopping in shops I think it’s a big waste of time lol but for some reason Steph doesn’t agree with me.

Every day is a gift.

Love Andy xx

PS. Got it wrong tut it’s Privigen not Previgen. Not a big mistake but it’s my steroid night and I’ve got plenty of time on my hands. It’s hard to keep up with all these drugs I’m on, got a new one today and all I can remember about it’s name at the moment is it starts with a T lol. xx

• This reply was modified 8 years, 11 months ago by  andyg.

[bandityogaParticipant]

Hi Jan

Good to hear your treatment is still working. I wouldn’t like your heating bills but if it works why not. Ian also had a hard time harvesting stem cells but eventually got there. I hope you do manage to harvest and have a successful SCT.

Ian is still doing well although he has had a cough for weeks but the doctor is not concerned as it isn’t in his chest. We are looking for to Christmas and having dinner at my son’s house in Edinburgh. My daughter and her partner are coming up from London for a few days. Just love seeing the little faces of our granddaughters. I hope you have a lovely time and wish you a happy healthy new year. x

Helen

Sorry to hear your FLC are rising but I hope they can manage to find a treatment that works. I know how worrying it can be. Did you have a good day in York? Ian is 60 in March and I have some planning to do. I think a meal with the family and hoping to go to Vienna for a few days if all is well.

Wishing you a Merry Christmas and a happy healthy new year. x

Andy

Good to know you are getting fitter and the treatment is still working. Keep up with the exercises and you’ll be walking the dog soon. Have a Merry Christmas and a happy healthy New Year to you and Steph. x

Maureen

[janwParticipant]

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

[tonyfParticipant]

Hiya Jan, funny, so many households are similar. We’ve decided that health issues will take priority. At the moment,our number 2 son has recently had a foot operation, so he’s on crutches, his son, age 3 gets every cold imaginable, brother in law has smoldering waldenstroms! daughter is having her first baby early march, but has sticky blood so is injecting herself daily, and me, I’ve just had a few days at the hotel Leicester Royal Infirmary, unknown infection, oh and a second SCT coming up soon.
I don’t know how my wife copes, but she does, usually with a smile.
Im surprised she hasn’t hit the wine bottle yet!
Keep smiling through.
Tony F

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