From patientpower.info. Dr. Berenson talks about Zometa, Vitamin D, Calcium, Stem Cell Transplant and other treatments for multiple myeloma. Myeloma Update from ASCO from Patient Power® on Vimeo.
Thank you to Sandy for her comment on my last post. As my post occurred on a holiday (in the States) weekend, I forget that people might not see my blog till later in the week or it might get crushed with all the other updates people get. So to Sandy’s point, a little more color, but first, apologies for the reiteration, but here’s the details I posted previously.
(repeat from prior post – new information below)
My cousin was recently diagnosed with breast cancer, has had a tumor removed and is now facing chemotherapy. And is scared shitless!
She’s 54, the tumor was about 3cm, upon removal they were able to identify trace amounts of the cancer in the lymph nodes. She’s scheduled to get TC in four cycles (I believe). But she’s scared of the chemotherapy and not thinking of what could happen if she didn’t get the chemo. On a scale of 1-50 she’s a score of 23, so about halfway. She has cancelled one appointment and I’ve not yet heard if she’s gotten a second yet. In prep for her first round they had her on dexamethazone and failed to warn her of the effects. She took it at 1630 and was on the phone with me flipping out at 0230. Had she known what to expect she could have been prepped for a “speedy” night but not knowing, her only focus was the chemo and what could go wrong. She ended up canceling her appointment the next day.
Now this blog has been mostly about MM but being scared of chemo knows no borders – just some chemo is more of an annoyance than others. What I’m looking for is examples, feedback or words of wisdom I can pass back to my cousin. Whether it be about chemo, breast cancer or anything else relevant, please post a comment so I can pass them along to her. Any help would be greatly appreciated.
Sandy brought up a point that my cousin may be in denial (most definitely) while also being scared of the drugs, their effect, etc. She can’t take tylenol/codeine without feeling like she’s on a 70’s acid trip. But again, I think that’s being more scared than anything else. Regarding Sandy’s comment about getting online and taking control – well that’s a bit of a problem as, until 2 weeks ago, she didn’t have an email address. She’s sent me one email (the night the Dex hit her!) and she’s not yet responded – most likely due to the fact she doesn’t know how! She does have a son and daughter that can assist with email but I need to call her to get her more info. Regarding family, her sister is a nurse (oncology I believe) so she has resources but she follows the clan with her stubbornness! At some point she’ll read this and probably hate me but I’m hoping the information I get from my blog readers is such that she’ll thank me in the long run!
If you have any feedback (Sandy, thanks for the start) I’d much appreciate it. Please leave a comment and let me know. Again, thanks for reading!
Bonjour to all of you out in Myelomaville! That means ‘hello!’ to my friends down at the 5 & Dime.
Thanks to the dedicated folks at the International Myeloma Foundation, you can watch an exciting, hopeful, helpful internet video presentation from the 2011 International Myeloma Workshop meetings taking place in Paris this week. C’est magnifique!
This presentation addresses some of the ‘novel
This is from the AP. Other reports mentioned only “complications,” which we now know to be pneumonia. It’s very common for myeloma patients to develop pneumonia.
Ferraro died at Massachusetts General Hospital, where she had gone Monday for a procedure to relieve back pain caused by a fracture. Such fractures are common in people with her type of blood cancer, multiple myeloma, because of the thinning of their bones, said Dr. Noopur Raje, the Mass General doctor who treated her.
Ferraro, however, developed pneumonia, which made it impossible to perform the procedure, and it soon became clear she didn’t have long to live, Raje said. Since she was too ill to return to New York, her family went to Boston.
Raje said it seemed Ferraro held out until her husband and three children arrived. They were all at her bedside when she passed, she said.
“Gerry actually waited for all of them to come, which I think was incredible,” said Raje, director of the meyloma program at the hospital’s cancer center. “They were all able to say their goodbyes to Mom.”
Firstly many thanks to those who have left comments and sorry I didn’t respond individually – it has been one of those weeks! It is good to know the blog can be useful.
Well I’d hoped that I’d be feeling a lot better by now, but despite the last scab falling off the rash is still very painful – it looks raw in places where the scabs came off and the whole area is tender and prickly. Not only that but almost since the start I have had very weird electric shock type nerve contractions centre/side back mostly when lying down on my right and sometimes left side. I end up having to sleep slightly propped up or flat on my back, which I hate. I’m hoping that this will gradually go, as I know that you can be left with this sort of thing for months.
In the meantime I have continued with the imipramine – no idea whether it is doing anything – and am trying Vaseline on the rash. Also I have been put on a low daily dose of aciclovir to prevent me getting another bout of shingles – what a thought!
I did get an extra week off my treatment, and restarted last Tuesday. The good news was that another test showed my light chains down again! Of course the side-effects are making me a bit down – by Sat I’m usually pretty grotty – but I’m taking it very easy!
Despite it all I have actually tried to keep busy – stacks of anti-cuts work via emails have taken up a lot of time. I have also tried to do some physical activity every day, even if it is housework!
Well – not much other news. I see from emails I get from the International MM Federation that there are lots of new drugs and regimes being tested, so hopefully as time goes by, MM will become much more of a chronic condition.
I hope you all have a good Xmas and I’ll write again soon.
Having got through several rounds of treatment with some success in reducing the ‘bad’ levels, I have suddenly developed shingles, probably as a result of my depressed immune system.
I write the next bit more for the benefit of fellow myeloma sufferers who may get the disease! So friends can skip the gory details.
Shingles presents differently for different people, so mine is only one experience and yours might be dealt with in a different way, depending on your age, state of health and the location of the rash. In immuno-compromised patients and the elderly it can be dangerous so make sure you get treatment immediately you suspect it.
I started off with an increasingly severe and mysterious pain/deep ache developing round my trunk from the right back, spreading over a day or so to under my right ribs. It also felt oddly tingly sometimes. I was baffled by it (I have had my gallbladder out so it couldn’t be that!) and combined with my normal drug side-effects felt very miserable. Went to the hospital on Monday, after suffering over the weekend. Nothing showed up but my consultant noticed a couple of small red spots and said it could be shingles but was reluctant to begin treatment until more spots appeared. It’s really difficult to diagnose – people occasionally have their appendix out by mistake!!
On Tuesday I had to go for my Warfarin INR test at the GPs and the rash had suddenly spread under my arm. The nurse took a look and said it was shingles. To save time my GP prescribed aciclovir, an anti-viral 800mg x5 a day. The earlier you get an anti-viral the better.
The next couple of days I was in a huge amount of pain – and I say that as someone who tolerates pain quite well. Shingles runs along a nerve (can be anywhere) and mine is just under my ribcage. I had very sharp stabbing pains, especially when I stood or tried to walk, enough to make me catch my breath. I could hardly do anything and I couldn’t sleep properly. Totally miserable and I should have got help earlier.
Eventually I rang the GP and she gave me co-codamol and also imipramine, which is an anti-depressant, but which can be used in a very small dose for nerve pain. I don’t know which drug (Acyclovir or imipramine) worked, but by the next day the sharp pains had reduced considerably. I don’t tolerate co-codamol very well so only took 3 or 4 over a day or so and then stopped.
By now I had (and still have) a pretty big rash, on my right side from mid front to nearly mid back. It looks red and blotchy, scattered with pustules like chickenpox. The rash can continue to develop and spread for up to a week. I have also felt generally poorly with my temperature up a bit and sweating esp at night. The medication gives me terrible acid and I have felt dizzy, which is probably the meds too. My skin is generally sore, not just my rash. The rash itself is tender and a bit itchy, but I have slathered calamine lotion over it twice a day.
Into hospital today for a myeloma appt, and as my neutrofils (measure immune levels) were very low, all my treatment has been suspended for at least a week (ie both revlimid and steroids).
My blood levels for my Warfarin treatment have also gone haywire – rocketing up well above the norm and then pummeting dramatically after the dose was cut. This is due as much to the drugs as the illness. This means having a blood test every 3 to 4 days to change the dosage.
At this stage I can say that the worst pain is gone but last night on lying down I had quite a lot of strong ‘electric shock’ sensations mid back, especially lying on my right side. It’s like a shooting sensation down a nerve all down my back and makes me twitch. I’m hoping this isn’t a sign that I will get the dreaded post-herpetic neuralgia – that is pain that lasts for weeks, months or even years after a bout of shingles. I already have peuripheral neuropathy in my feet and apparently that can make you more vulnerable to lasting pain. However, there are some drug treatments and it might never happen! Let’s take an optimistic view!
I still feel very tired and sore but can walk around. I have a vague headache on and off.
It’s all a bit disappointing as I did a lot of work on our local anti-cuts campaign and then couldn’t go to the public meeting which we organised and won’t be able to go to the next meeting or Trades Council. However, you’d be surprised what you can do from the computer!!
To sumarise a few issues:
If you get a mysterious band of pain developing anywhere or itching/tender skin, consider shingles.
If it’s on your face/head get seen quickly!
You don’t catch it from people with chickenpox. It comes from the chickenpox virus luring within you and popping out!! Shingles isn’t catching either. You can rarely give chickenpox to others via the rash, so avoid people, esp small children and pregnant women until your last scab drops off.
Get an anti-viral asap. Don’t be a hero – get something for the pain if it’s bad – sooner rather than later. It may help with quicker recovery too. If I had known I would have got the imipramine earlier. Good old calamine for the rash. Can also use icepacks – I haven’t personally, but might try it as the rash does feel hot and itchy.
If you have a low immune system already, you may need to cut back on eg anti-cancer drugs, so ask your consultant.
If you are on Warfarin, you will need to tell the anti-coag people about it and the drugs and get regularly tested.
Take it easy.That’s an order! You wouldn’t believe how many books I’ve read….
Don’t get the rash wet. Keep as clean as possible and try not to touch or scratch your rash – wear loose clothes.
Get others to drive you to appointments or get a taxi – I have been quite befuddled. Still am, so if this is full of typos – that’s my excuse.
Hope this is helpful – if I can remember how to do it I will add a link or two.
Will catch up with the story in a few days!
Last night my wife, Ivonne, told me about events that happened after I returned to the transplant unit from one of my extended stays in the ICU. I remember somewhere between nothing and very little of that time, being either unconscious or lost in hallucination (in mine, I was being interrogated by agents of the government who accused me of having leaked super-classified information to the press)
Just read my rather miserable last blog! I did feel pretty grotty what with the cough and horrid antibiotics which upset my stomach, but I did get over it OK and I’m sure quite a few of you had bad colds too!
I’m plodding through the latest round of treatment. Won’t pretend it’s not hard work, but still managing it and I pretty much know what to expect on each day of the week. I’m waiting for another test result and hoping it shows as good an improvement as the first one.
I have managed to put a bit of weight on – steroids give me a big appetite, even when they also make me a bit nauseous – sort of a bit like pregnancy! And now the gallbladder is out I’m eating a bit more fat. My most embarrassing side effects are bright red cheeks mostly Thurs and Fridays, a trembling voice sometimes and a terrible memory (forgetting what I was saying and doing very quickly).
The last week has been all union and anti-cuts stuff, but I am hoping to get some gardening done. Lots to plant still.
For the benefit of other myeloma people I may try to write a document on the treatment I am on atm, just for interest. It will be a document not a blog.
Anyway, no more news, so take care everyone!
Hi, sitting here at nearly 4 in the morning, unable to sleep because of a cold, which makes me cough every time I lie down. Have just done my Trades Council minutes and agenda and am contemplating doing the ironing!
I am just coming up to the end of round two of the Revlimid. My consultant was away last appointment, but the registrar said that the light chains (my particular measure) had dropped which is good news, although it’s early days yet.
Currently I feel horrible, what with steroid withdrawal, a bad cold/cough and precautionary antibiotics (which always make me feel bad). Just a case of riding it out, but a bit depressing. I haven’t had a cold for so long I’ve forgotten what it’s like! Felt a fraud going into the hospital yesterday to check things out, but my temp was up, not quite to the dreaded 38, but enough to worry me, as my temp is usually a bit on the low side. Typically it had dropped by the time I got the obs done, although then rose again when I got home!! Better safe than sorry though.
Well, not much other news, and maybe I shall try my bed again! Take care everyone!
Hi, apologies for being so remiss with my blogs. There wasn’t really much to report.
Unfortunately back in Feb my light chains (an indicator of my particular myeloma) started to twitch and since then the myeloma has returned – earlier than expected. I did not make this very public until recently as there didn’t seem to be much point until I started treatment. I had to have my gallbladder out (eventually done in early July – painful afterwards but went OK), before the treatment started.
I have started (this week) a relatively new drug called Revlimid which has over 50% success rate at stabilising or improving myeloma. It does have some potentially dangerous side effects, in particular lowering my blood counts and Deep Vein Thromosis. They may put me on Warfarin to counter this. At the moment I take a small dose of aspirin. I am very tired and quite shaky and no longer need a sleeping tablet – I also have a sleep in the afternoon! Once a week I take a big dose of steroids, which as before, makes me buzzy, hungry and stops me sleeping for a night or two. I also get very pink cheeks and fingers! I do a three week cycle of pills and then get a week off. If it works I could stay on the cycle indefinitely. If it doesn’t then other drug options are available and long term possibly a second transplant – maybe using donor cells this time.
The good news is that I had a skeletal survey which showed no bone damage yet and my kidneys are OK (often vulnerable in myeloma).
As the treatment is going to take a while to adapt to, we haven’t gone away for a holiday. Bob is having a great time doing DIY (currently erecting a greenhouse) – he is not very bothered about trips away. It transpired that the kids wanted to do their own thing over the hols so we gave them the money we would have spent. Tom and Jemma went to Paris for a few days and Rosie and Paul did a rock festival in Belgium and then interrail (went to Transylvania!). We have helped Rosie and Paul move into a rented house in Aston. Tom and Jemma are still happy in their own little place and Bob and Paul helped them to erect a shed.
I have been very busy with union work and writing letters to the paper re the disgraceful spending cuts. I have also started throwing all my old school stuff away – quite a wrench, but has to be done!
I will try to write more frequently re the treatment and if anyone with myeloma wants to correspond re treatment please do. I still love having visitors, but old rules now have to apply – please only come if you are healthy!
Hope you all have a good holiday.