Tom – this is what has happened to me. I've had six months of 'apparent' but very debilitating treatment with Velcade. I went down to a complete response for a month and then immediately my paraproteins started growing. My other treatments were steroids and cycloph.
We will have to find another strategy, possibly an immediate salvage transplant.
I'd like to stress that some patients do have much more sustained responses on Velcade. I will be having a bone marrow biopsy and a PET/CT scan in the next couple of weeks to check what's really happening, as I'm also quite a low secretor.
Thanks for the links. I will print the first one out and show it to my oncologist.
Good luck with you recovery.
Eva
Hi Ian,
I had a smallish work pension from Scotland because I'd migrated from Australia and worked six years full time and then six years as a supply teacher in the UK. I had to stop teaching when I was dx as the initial chemo and transplant reduced my energies a lot and then some time later I had a shattered humerus with major surgery. Teaching adolescents is a very high powered job and requires lots of additional hours at home. So, no more career…..
What I recommend if you're a good phone person, is to find one person in the correct dept to liaise with. You should write, and then after about a week always do a follow-up call as people in organisations will often 'forget' to answer.
Some questions could be:
1. If you keep paying into it, what will your family get upon your death on a fortnightly basis? Will this happen regardless what age you die at, or is it linked to a special age like 55 or 60? Is there a sliding scale of benefits?
2. If you want to explore another route ( and that is often worth doing), you'll need a letter from your onc advising that your natural life span is likely to be cut short from a malignancy. You'll probably need two reports, one from the myeloma specialist and one from the general pracitioner. There is a another category called ' terminal benefits', but then you need you onc to be able to say that you are likely to die withing six months, and with myeloma, such assertions are often difficult to make. They may insist on a medical, but I claimed that this was ludicrous as my myeloma history was all based on blood tests and on the testimony of 'experts' as this is a rare cancer. There is also a time line of procedures that you can prepare -with comments on how each procedure affected you. You are trying to describe a profile of disability.
3. If your employers are prepared to pay out on your policy, they might be prepared to divide half of it into a lump sum, if you can make a case for the fact that this would really help you now. You could then ask to receive the other half as a fortnightly or monthly ongoing payment. This is just one option- it's the one I took.
I'm dealing with very small small sums of money here. I used my lump sum to support an adult son who was experiencing serious depression and couldn't work. The sum that comes in every month makes me feel I still have a bit of independence financially.
Remember, find out who the person you have to deal with. Get a list of what they want. Write the letters with the evidence attached. Don't be afraid to paint a picture of urgency( if that's the case). And then – always – phone, and keep phoning until the person answers. If you realise they are not the right one, then you might have to start from scratch with someone they recommend.
If you really can't get your head around this then work closely with someone you can trust. However because of confidentiality issues, then the letters must all be signed by you. If you don't want to talk on the phone you'll have to be in the same room and give permission verbally for the other person to speak on your behalf.
It's really worth sorting out.
Eva
Dear Dai,
I know some of what you're going through as I've just had a very extended period on Velcade plus extras. 'Whacked' doesn't begin to cover it. They've taken me off it and in one week I have gotten some of my energies back. Like you, I'm heading for the unknown and need a big confab with my consultant.
Best to you and Janet.
Eva
Hi Barry,
You waited for a long time before writing to us, and I bet that at the moment you don't feel like it at all. I'm rather surprised that you've been able to write such a long and coherent email at this stage of the transplant…..
When I was at that stage I seemed to lose my ability to decode print properly – almost like losing a part of my mind. It came back after a few days at home and then I was able to read something and know what it was about.
You're right – there's something about the transplant that can make you feel you're best off asleep because all the meds to make you cope better don't add up to 'normal.'
I felt nausea as well and gave up on solid food for a while. When I came home by taste buds were debased and I wanted to eat rubbish. My husband was queuing up with teenagers during their lunch breaks to get me a sausage roll with ketchup. I did recover eventually and tonight( it's almost five years since my transplant- haven't been in remission all the time- got two and a half years – but have had different treatments as well in the meantime), well tonight, to get back to my sentence, I made seafood paella and went for a walk.
I'm so glad you have a very supportive family – it does make a big difference.
Good luck,
Eva
Dear David,
I'm so happy to hear that you've been on your trip!
Best wishes to you and your wife. I hope you can do things at home that help you to live in the moment and have a good time.
My next trip is coming up very soon: 22nd to 27th Sept, but unfortunately it will be about lots of tests and consultations in London. I will be staying at a B&B in Wimbledon, not far from the hospital, so maybe I'll be able to go for a walk if the weather is good. Who knows what mischief I will get up to…..
Eva
Hi- You might be able to ask for sedation. There's a kind of sedation that lasts for about twenty minutes.
Eva
Dear Lynne,
I'm not on Lenalidomide but I get a very red face about a day after I take steroids. The redness comes and goes and is accompanied by hot flushes. When I stop taking steroids after a couple of days I get a pretty bad steroid withdrawal with great fatigue.
Can you tell us a bit about your myeloma?
Best for your treatment,
Eva
Dai,
Sorry you're sleepless as well as the other probs. I imagine it will be important to work out whether you have an infection anywhere and if so, what antibiotics to take…… but then you already know that.
It's difficult to have what appears to be a temperature and not to be sure what to do about it. I have a number of different antibiotics that I have to keep at home in case I have a prob at the weekend or in the night. When I was on one of the early cycles of Velcade, I had a bizarre infection in one of my fingers, just from the nailbed and I think a bit of pulled skin. Because my finger went purple and swelled very fast I phoned the hospital at night. A head nurse advised me which of my antibiotics to take, and then I went to my local GP the next day and I was put on one of the other antibiotics instead. Maybe this suggests I acted too fast, but the purple area was spreading and I was feeling most unwell. I went on to make a fast recovery.
I hope you can get advice as soon as possible. I don't fully understand about your tooth so I'm not commenting on that. I don't know whether there is someone on night duty who could chat to you without you making a trip over when you are so uncomfortable. I certainly hope you will the chance to speak to someone tomorrow and that they will be capable of absorbing what's happening now, as well as appreciating all of this in the context of having mm.
Best,
Eva
Dear Dai,
I'm so sorry you're going through this. I've had two episodes of acute shoulder pain, so bad that I was stuck on the couch, even unable to walk. These got better over a period of weeks. I was on dihydrocodeine and pethidine for the pain. My docs assumed that in my case it was frozen shoulder. Who knows? They did x-rays which don't always pick everything up.
Because I am a low secretor, I'll possibly have a PET/CT scan next time I visit my onc in London.
I'm on week three of cycle seven of Velcade, dex and cyclophos. Have been to the hospital today and am just crashing from the treatment. I get a few hours of wakefulness from the dex, but in general, I get side-effects that have me in bed for most of the next four days. Then there's a couple of better days when the meds are wearing off. I've been able to cook meals in the last couple of days and to freeze them for my husband……For some weird reason I don't like watching telly much but I'm always searching for things I can do sitting up in bed.
Love to you and Janet,
Eva
Dear Maureen,
I am so so happy for you both: enjoy your new era. Maureen I'm also pleased you're not working anymore – it's so difficult to juggle too many responsibilities. I still miss work and occasionally I teach in my dreams all night. I never dream I get paid though!
Best,
Eva
Hi Helen,
I'm on week two of cycle seven. I don't know if we're on an identical treatment: I'm on Velcade once weekly, dex 20mg day of Velcade, as well as day after, and then because the Velcade didn't seem to kick in during the first two cycles, they put me on Cyclophosphamide 300mg once a week as well. So, I'm actually on CyBorD.
I generally get about two good days a week. I also have heavy legs and get the runs. My lite chains were about the same as yours when last tested, but there is still a small m-spike.
It's a very odd challenge to try and learn to do things when you can, while having an uncertain future. The day before my treatment on Monday(my best day usually), I made a special Indian dish in larger quantities for freezing – a blended spinach/curry/chilli/ginger/lemon sauce with curried meat, rice and roasted almonds. When I went to the hospital yesterday( an eighty mile trip), I did some clothes shopping for my husband because he was starting to look grotty. Last week I had four clear hours in which I was able to write. And yet, I can have days when I do zilcho, because of nausea, diarrhea and fatigue. I can be so weak from dex withdrawal and the other side effects that my husband sometimes has to bring me a snack to bed. It's a challenge to acknowledge my vulnerability and then to be able to be active when I have a small window of opportunity.
Helen, don't answer this if you're at the wrong end of a cycle: I was able to write this because I'm dexed up.
Best,
Eva
Helen, have you ever tried googling, ' Dana-Farber protocol for peripheral neuropathy?'
I don't know if it works, though I have taken some of the advice.
Eva
Hi Carol,
I've had to take thyroxine after being on Thal and Dex. Not a total cessation of the thyroid working, but it became sluggish. Dex is supposed to be a common culprit. Thyroid levels can generally be adjusted as long as you have tests fairly frequently.
Good luck,
Eva
Dear Mari,
Sorry to hear such devastating news.
I hope you will eventually gain sustenance from your memories of your wonderful relationship.
Eva
Hi Alan,
I've just had six months on Cycloph, Dex and Velcade. My first four months were very bearable, but unless you've had chemo in the past,it's often rather alarming when you begin on a new treatment.
In the first four months the Velcade made me fatigued and I had some twinges of pain in my bones that lasted a couple of days around the times of each injection. Occasionally I got a Velcade 'headache' for twenty-four hours. It was easily treated with pain killers.
The Dex always is a bit of a problem on the withdrawal days as I have trouble walking properly and just get super weak. It passes.
The cycloph. can certainly create nausea and it helps to take the meds that have been recommended.
This does not achieve the comparison you are wondering about, but I can assure you that for some people, Velcade is not entirely side-effect free.
Good luck,
Eva
