First, the second half of my return from Orlando story. To make a long story short, I am learning that spicy food of certain types do not sit well on Thursdays given Velcade. I had some Mexican in the Orlando airport and spent the first hour of the flight uncomfortable, the second hour very uncomfortable, and the next 15 minutes throwing up in the toilet at the back of the plane. After which I felt considerably better.
Things are going well. I am noticing that constipation requires earlier action. My cadence was one senna pill on Wednesday evenings and maybe on on Thursday mornings. I have found now that Tuesday night, Wednesday morning and Wednesday night are required. May take one more tonight. I'm not sure if it gets worse as I take more Revlimid during a given cycle but I have five more pills to go on this one.
Otherwise things are good!
Now here is a chance for you lurking homeopaths (those that I haven't scared away by my complete embrace of deadly chemicals) to chime in. I didn't lose and regain my tastebuds two separate times to never enjoy wine again. In fact I enjoy it quite a bit. Plus my liver is lightly taxed by my lipitor. There are four liver markers -- two are always fine, one is usually fine, and the fourth is consistently a little high. I have been taking liver.52 which I get from Amazon and that brought the third marker well into the normal range, but the fourth marker -- ALT which is the short-term enzymatic response to lipitor and alcohol, is still around 100 when it should be more like 70. These are not catastrophic numbers and BB as well as my local oncologist GD say everything is fine (BB's one comment in dictation to my file last year was that "patient probably needs to drink more"). But just for kicks I bought some Milk Thistle which I've been told is good at helping out the ol' liver.
Well I took this for about three weeks and I noticed what I thought was bone pain in the lower right ribs -- which scared me at first because that's where one of my lesions was. But it's actually a more dull pain and it's the liver! So needless to say, I'm stopping the Milk Thistle. I will look and see what's going on with the blood chemistry. If it brought down the ALT I may continue with it on a smaller dose (I had been using the "management" dose of 8 capsules a day versus the "maintenance" dose of half that).
Not the most exciting news, but it had been a while since my last post, so...
Hi Nick,
ReplyDeleteJust a little concerned here and I certainly do not wish to speak 'out of turn' and what do I know anyway, but regarding 'Milk Thistle' and liver.52, do you have any concerns about taking these extra supplements while on Velcade? Do you run it by your Meds team first?
H was on Velcade as you know, we were given strict instructions not to add any supplements. I think green tea was also on the list to avoid. Velcade has not work for H but we did follow all given advice. Still we did adopted from day-one of diagnosis, the min two and a half litres of water daily as his kidneys were so badly involved and this has certainly up to now, saved them and the need for Dialysis. Now in between Chemo, he has a very occasional Guiness and blood counts are a tad better.
I know a lot of this is trial and error but with the greatest of respect please be careful with any supplements and Velcade.
All very best wishes.
Thank you so much for your concern and kindness, Susie! I was aware of the green tea conflict but you are right, any supplements need to be done with caution. I will make sure to mention it to my doctors!
ReplyDeleteI think of you and Hamada daily and wish you all the best. I hope the days are few before H's next Guinness and perhaps one day we'll toast our good health together over one!
Warmly,
Nick
Nick -- This is not the first time I've heard of Milk Thistle causing some issues and while I support homeopathy, clearly the power of certain elements in combination with the chemicals can be scary. I do wish the naturopathic folks would be better received by the straight-line docs as I think they each have valuable information to offer. Perhaps in time this will occur. Meanwhile I also have to encourage anyone who has taken the traditional medical route to be cautious about including even something as presumably innocuous as 'green' tea which has proven to be a negative for those on Velcade.
ReplyDeleteSome of your newer readers might want to go to Margaret's Corner where she has some wonderful research to read on supplements.
All that being said, I wonder about those with MM taking Boiron's "Oscillo" when symptoms of a cold or flu present themselves? I have used it quite successfully during flu season and mitigated my having full-blown flu... but I don't have immune issues. It is supposed to give the immune system a boost to help fight the flu... not that I'm suggesting experimentation, only wondering it if has ever been used?
Hi there, I am not a "lurking homeopath," but rather the curcumin-taking author of "Margaret's Corner. Living with smoldering myeloma." :-)
ReplyDeleteI have never taken milk thistle, though I know many who do and haven't had any trouble with it, even folks on chemo. But of course each case is an individual case...so I hope the milk thistle turns out not to have caused you any harm, Nick.
Now, in answer to Sandy's question, I have been taking Oscillococcinum in the pre-flu season for the past three years. It seems to help...at any rate, it has done me no harm.
I used to get bronchitis (if not a full-blown case of the flu!) every winter. But since I have been taking curcumin (Jan 2006) and, more recently, Boiron's Oscillo, I have rarely come down with more than a wee sniffle. I should add that I also have a regular flu shot. Lots of stuff for my tiny immune system...!
Plus, at the first symptom of...anything, I also take a teaspoonful of Manuka honey and some black elderberry extract, which has been shown to be effective against H1N1, too.
But, true, I would be very very cautious about taking supplements IF I were doing any chemo. The only supplement I trust completely is curcumin, which helps Velcade and Revlimid annihilate MM cells (=according to studies that you can find easily on PubMed).
Okay, I will stop blabbing now...
Lets not forget that some of us are also checking our Vitamin D levels, and taking supplements if needed. There are many articles about this, and I guess the questions is, how much to take to help us avoid the pesky cold/flu.
ReplyDeletehttp://articles.mercola.com/sites/articles/archive/2010/03/11/is-vitamin-d-the-silver-bullet-for-cancer.aspx
Nick, we look forward to your update on Milk Thistle. I am taking it now to help my liver process some of my meds, but am not on Velcade any more (didn't seem to be effective for me).
BTW - I thought (could be wrong) that the green tea restriction was only on the day of Velcade administration. I don't drink it myself (I suppose I should) but I thought I read that you only need to stay away from it on the day you get your V.
Nick, for constipation, ask your ONC if you can use CleanseMore. I found it much more effective and I understand it is more body friendly.
I apologize, Nick, for writing a second comment, but I do have a couple of things to add.
ReplyDeleteHanna, you are right. According to Dr. Durie, you (=generic "you") should avoid drinking green tea or taking EGCG supplements on your Velcade day. Otherwise, he said, green tea is fine. I have read this elsewhere as well.
Thanks also for bringing up the vit D issue. Very important one. Indeed, I hope that one day the vit D test will become Standard (with a capital "S") for all myeloma and MGUS patients. My assertion, btw, is based on the Mayo study showing that myeloma patients with low vit D levels had worse outcomes than those with normal levels.
Since the vit D test isn't a standard one YET, though, it's up to us patients to ask our doctors to add it to our routine set.
Hey NIck told ya vit d was the saviour of man. ps I have read in real meta (multi study evidence conglomeration) studies, milk thistle has no reproducible benefit. Though again drinking less may!!!
ReplyDeletehi Nick,
ReplyDeleteJames has been on milk thistle all along- a physician (medical or naturopathic) only formula called Silymarin from Mediherb, an Australian company that distributes through Standard Process in the USA. His doc was fine with it, and he's been on Velcade as well, also lots of other medications and supplements, all were Ok'd by his hematologist.
I'm a lurking naturopath, and wife of James (myeloma patient, diagnosed in April 2010 aged 39). Our doctor has been very receptive of all the supplements we've got James on. I think he's so supportive because:
a) We approach him with a lot of research from peer-reviewed journals to back up whatever we want to use with James
b) We totally respect him, have not declined any of his treatment medications, and are working with him as a team
c) James is achieving amazing results (IGG levels now normal after 3 rounds of chemo)-and no side effects from treatment, so our doctor is thrilled- and so are we- and all parties do credit the supplements with playing a role in this success
I don't think it needs to be a one or the other scenario at all. Chemo and supplements and lifestyle changes can all work synergistically. I think mutual respect between hematologist/oncologist and patient/family is paramount. If you approach with knowledge, research, and respect you will hopefully receive that in return. That being said, I wouldn't necessarily take the word of a hematologist who gives a clear "no" on supplements. I would try to ascertain if they've actually done their research and know clearly from that research that a supplement is contraindicated. I have found many doctors are apt to say "no" due to fear or ignorance, and they haven't actually done the research to know a supplement is harmful or contraindicated. At the same time, many naturopaths or other complementary health practitioners may tell you to take a lot of supplements without having done their research. Question them as well and make sure they know what they're talking about. At the end of the day, you are your biggest advocate, and your health is always going to be more of a priority to yourself than it is to a doctor, no matter how amazing that doctor may be.
Just a quick note to be wary of a lot of supplements on the market in the USA in particular. Vitamins and supplements are regulated as a food, not a pharmaceutical there, and that brings a lot of quality control issues, in my opinion. No requirement of good manufacturing practice. Australia and New Zealand are much stricter in this regard, and so is the EU, to the best of my knowledge.
Good luck to everyone on the myeloma roller coaster! And, by the way, I"m in the middle of setting up a website to address issues around cancer (especially myeloma), nutrition, food, and supplements. I'm hoping to use what we've learned on our myeloma journey, and through my work as a naturopath to help others. I'll come back and post details when it's up and running.
Cheers, Carlin
nice posting.Ayurveda
ReplyDeleteIndeed a nice post. I wish to say thanks to the arthur of this blog for sharing such precious info about Milk Thistle
DeleteHi,
ReplyDeleteHave you figured out if the Milk Thistle caused the pain?
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