Monday, January 16, 2006

Velcade--round one

As you all know, I received my first dose of velcade today. I now know how much people enjoy my analytical description of my treatment regimes (this is for you Patti Hallowell!) so here goes: blood work drawn, clinical trial coordinator pays a visit and explains once again what the routine will be, explains possible side effects, and invites questions, Dr. Rifkin conducts examination and I continue to look "beautiful", in his words, and then an IV, an antinausea drug, and a syringe full of velcade are given to me. A fifteen minute wait to make sure no adverse reaction and I get to go home, 1 1/4 hours after arriving. Not too bad. I return on Thursday for the second dose and will get 2 next week, then they analyze the blood and I get a week off before the second of four cycles begins. I didn't have many questions as Molly Johnston, the daughter of my good friend Gail, stopped by over the holidays and explained to all of us the cellular function of velcade and why it can be so good for myeloma patients. Molly has a degree in biology and is working in the research lab at National Jewish Hospital here in Denver. She had diagrams and velcade studies for us and even wrote everything out in laymen's terms for our nonscientific minds. Thank you Molly!

An interesting side note: one week ago I visited an herbalist on the recommendation of someone I met who has myeloma but claims he took it into remission after seeing this herbalist who prescribed a variety of herbs and vitamins. I purchased many such herbs on her recommendation and have diligently been taking them as prescribed this past week. I am feeling pretty good this week and have been able to resume my visits to the health club; I'm also over the crud. My white count today is 3.8, which is higher than it has been in more than a month and my neutrophil count is similarly up--both good signs. So I presented Dr. Rifkin with my list of herbs I'm taking and asked whether he thought I shouldn't be taking any of them. He says that since we don't know what they will do with the velcade I should stay away from them until we see how I respond to the velcade. We (Susan, Julia and I) are discussing whether I should follow that advice. I suspect they won't harm any positive results from the velcade but might wait a few weeks before resuming the herbal diet to see how I respond to the velcade. On the other hand, I am just as inclined to continue with them as I think they have helped restore my immune system function. Your thoughts will be appreciated.--but not necessarily followed--I always have been a contrarian.

Catherine returned to Boulder today and we miss her already, even though she will be visiting with us 2 or 3 times a week as she will be working part time at her new job in Cherry Creek. Julia returns to school this coming weekend and until then is planning numerous ski trips to our snow laden ski resorts. Susan continues to be the pillar of strength and hope for my continued health--when I returned home from the clinic today she had just completed saying a rosary for me. We all had a great holiday, laughed way too much, and enjoyed just being together.

Friends continue to show up on the blog, which always gives me a smile. I particularly loved hearing that one of my high school friends (yes, you Patti, once again) is teaching the daughter of another of my high school friends (that would be you Howie). Somehow it seems to me that justice would have been better served if Howie had, not only a sweet daughter, but also a son like himself to give him a bit of a challenge comparable to those challenges Howie gave his mom. On the other hand, nothing softens up us "tough guys" more than having a daughter or two to wrap us around their little fingers!

I continue to be optimistic for this coming year and extend my gratitude once again for all our many friends who have supported us through these past 10 months. My best to all of you. Love, Dan

10 comments:

sigunjoe said...

Dear Dan,

So glad the first day of velcade is over for you. We keep our fingers crossed that the side-effects will be minimal. Does it affect your appetite? How wonderful to have bright Molly around to explain in layman's terms how velcade functions!

We will write more later -- must dash off to cook a luncheon for 30 ladies at our Junior Guild... Bises, Sigun.

Ingrid said...

Wonderful, wonderful news.
Great that you got to know so much about the velcade. Yes, I too love your explicit explanations to what is going on with you.
And I loved your sentence about you appreciating our thoughts about the herbs, with no guarantee to follow them.
Exactly right, do you remember when we talked about that in November? I definitively agree that you should only do, with what YOU are comfortable, BUT be always open to any suggestions you might get.
Therefore: my opinion to this?
Herbs might be wonderful, herbs usually do not have any negative effects on anything. Or they are good, or they do nothing.
Dr. Rifkin anyway is the Pope in this story. Probably what he says is the best.
BUT, let's not forget, also his attempt with the stem cell surgery did not work. So even the Pope here is now at his second attempt.
I,... I personally, what I would do??? Well, if I would anyhow be convinced that those herbs are the best for me, well, I would take them.
Whether I would wait to see how the velcade does? Hmm, tough question !!! Very tough !!!
Probably only until the next blood screening, and if there is any change in negative I would immediately start with the herbs again. If the blood screening shows a stable situation I would wait for the upcoming screening, and so on.
But with the first more negative blood screening, I would start with the herbs again.

Back to the velcade: Sigun asks, whether it affects your appetite. Well, I'm afraid it does, if one of the velcade side effects is nausea. Am I right?

But at least, when the nausea is not too bad, can you eat whatever you want, or is it again like after the stem cell surgery, where you had to pay so much attention to what you eat and how it had to be prepared?

Keep us updated, please. Any tiny little news from you is most appreciated. Even just knowing, whether you had to vomit or not. I know it is a pain in the rear to get on the Pc, when you're not in the mood for it. But remember us, living so far away, like Sigun in Paris, Arlene in New York, your friends in the Antartica and last not least me here in your beloved Siena.
Love,
Ingrid

Brett said...

What a wonderful and beautiful post! Thanks for the update and the opportunity to reflect on your amazing strength and patience. I have no real opinion about the herbals, but I've never been a fan of western medicine. Will yours mess with the others? Sure, it's entirely possible. Is that a risk you want to take? You're the only one who can decide that. Medicine is educated guess work, nothing more, nothing less, which means that your doctors are treating you as THEY they should. Consider now treating yourself as YOU think you should.

Having just returned from Paris, in every pharmacy there were herbal medicines, and they were more prominent than the chemical meds. I'll let that speak for itself.

I'll call you when I get over the jet-lag and the exhaustion.

Be well, my friend.

Lynne said...

Dear Dan & Susan,

Just want you to know that we think of you always and continue to pray and hope the best for you! Your news threw us for a loop but we, too, are again filled with good thoughts and are sending our positive vibes your way!

Thank you so much for sharing this journey with us!

Love,
Spike and Lynne

sigunjoe said...

Dear Dan,
You seem to be not only in good spirits but in feisty ones. Could it be the exhilaration of the new year or the chance to exercise your contrarian musculature? Or both?
Anyhway, I have an opinion. I'll start with the latest of the epiphanies to come down on you and Susan and the girls. This is the arrival of Molly on the scene to give you a detailed and nuanced picture of velcade and its demonstrated efficacy in myeloma cases. Where else in the world but at 145 Garfield Street could all these blessings be dropping? Your support system just grows and grows.
Now to the herbs. As you know, I have dabbled in alternative medicine and I believe it holds a wealth of healing. My six-week regimen with a Chinese herb doctor for my asthma resulted in a continuing diminution of its severity. It didn't go away, but it was tamed. Can I be absolutely sure it was the herbs? No, because I was going on anecdodal stuff, testimony of people who had been cured of asthma by herbs.Also, I loved the mystery and ritual and the weird beauty of all those dried plants and ground up hooves and antlers.
Your case is far more serious and therefore calls for far more rigor than I applied. First of all, we all know that nobody can supply the kind of clinical support for any herbs that, say, Molly presented in her tutorial on velcade.
Next thing to consider is the posible interaction between the herbs and the medicines, particularly velcade. I admire Ingrid's wisdom for the most part but disagree that herbs cannot harm you. I have read a fair amount about herbal treatments over the years and recall that some herbs are toxic even without the presence of other medications.
My big point is that before you take up the herbs again, you ought to have more evidence of their efficacy in you case. Also there is literature about specific herbs that could be googled. The downside of alternative medicine for me is that it it to an unnerving extent faith-based. Our prayers are rightly faith based, but our medical care needs to have some basis in science. By the way, a year or so ago, maybe longer, I read that the National Institutes of Health was launching the first rigorous studies in alternative medicines, and I think herbs were right in there. Maybe there is literature on herbs and myeloma that you could access.
Brett was right about the omnipresence of homeopathic medicines in Paris pharmacies. Our French friends use them. But the French are also the biggest hypochondriacs I have ever encountered. Perhaps the truth lies somewhere between.
Another point: I don't think herbal medicines take such quick effect that you can see results in only one week. Self-diagnosis is so emotionally fraught I would wonder about this.
Bottom line for me: Follow the doctor's orders until and unless you have some really hard evidence that supports going to herbs. Take this case to court, counsellor!
Love to all,
Joe

Brother Ted said...

As a Virgo you know that I have to give my opinion. Also as a Virgo I am not prone to dabble in alternative remedies. I would pose that the rise in your numbers is due to the "CRUD." The immune system needs to be challenged and that is what the crud did, it jump started a system that was just sitting there musing about the benefits if herbal treatments. That said, I also think that healing has a great deal to do with our mental wellbeing and our sense of personal power over things, like bacteria and viruses. That sense gives us a boost when we are fighting the meanees. When all we had were home remedies, mostly herbs, we humans didn't do a very good job of keeping the crud and other things from wiping us out. So in the long run I will stick with western medicine, even though, "the cure is often worse than the bite." That statement probably grows out of some foul tasting herbal potion that one had to take when attacked by the crud.

I am really glad to hear that you are getting back to the gym, that you have begun the Velcade treatments and that you have had such a nice time with family and friends. The path is long but there are so many wonderful sites and experiences along the way.

Arlene said...

Hi,

I waited for and read your blog on Monday evening after I had spoken to Susan, but this is the first chance I have had to really take time and respond.

I hope the chemo regimen is not too tough on you, so you can keep up your strength and get in some continued exercise.

Re. the herbal remedies - I have always been a proponent of alternative therapies and have used them (herbals, intravenous vitamin therapies, acupuncture) many times when I was sick with Lymes Disease, following my long antibiotic regimen - ALWAYS under my nutritionist's care (an MD who I saw in Ridgefield, Connecticut) and with FULL KNOWLEDGE of my primary care doctor. It did help.

That all being said, I hope the article below comes out on the blog. The Physician’s Desk Reference (PDR) comes out yearly. It is used by clinicians every day and clearly lists all aspects of drugs that are on the market today, including indications and contraindication, adverse reactions, etc.

Most recently, I have been ordering the PDR for Herbal Medicine for several of our providers who have requested it, and it too lists “Contraindications and Adverse Reactions” as mentioned below.

PLEASE CONSIDER THIS WHEN THINKING OF DOING SOMETHING WITHOUT YOUR DOCTOR'S APPROVAL.

Love you!

Ar

PDR® for Herbal Medicines, Third Edition





New, Expanded, Improved, ComprehensiveBuilding on its best-selling predecessors, the new PDR for Herbal Medicines, Third Edition has left no resource unturned to bring together the latest scientific data in the most comprehensive herbal reference compiled.The third edition goes far beyond the original source, adding a new section on Nutritional Supplements and new information aimed at greatly enhancing patient management by medical practitioners. All monographs have been updated to include recent scientific findings on efficacy, safety and potential interactions; clinical trials (including abstracts); case reports; and meta-analysis results. This new information has resulted in greatly expanded Effects, Contraindications, Precautions and Adverse Reactions, and Dosage sections of each monograph.· Indexed by common name · Asian, Indian and Homeopathic Herbs Index · Safety Guide · Daily dosage information for unprocessed herbs and commercially available brand name products · Manufacturers' Index, including name, address, contact information and product list · Trade names of available products added to each monograph · Expanded Drug/Herb Interaction Guide · Therapeutic Category Index · Clinical Management of Interactions

Brother Ted said...

Since Molly in not available for home visits there is a tremendously good video at the web site, listed below, that gives a very graphic explanation of the Velcade mechanism.



http://www.mlnm.com/clinicians/
oncology/velcade/mechanism.asp

Patty Nelms said...

Good Morning Dan!

You are such a trooper. What an inspiration you are to those of us who call you "friend".

My thoughts (since you asked) regarding alternative healing or herbal remedies . . . when I began implementing more of those choices into my regime, I felt more empowered. I felt I was once again in charge and responsible for my own body. That being said, I still used western medicine but in time gained the confidence to take part in what I would and would not do. Ah, the power to say "NO, thank you". My success with combining both natural and allopathic medicine had a great deal to do with my frame of mind. Of course, as you know I had a Dr. that was way too busy to take the time to explain drugs, reactions, plan of action, etc. I felt as if I were at his mercy. In any case, my suggestion is to look within for what feels right. I promise you'll get an answer. What works for you may be entirely different than the next person. We're all wired so differently.

I'm really proud of you. Stay strong! We've all got your back!
Love you,
P

Howie said...

Fuzz,

Thought I better check in and let you know that I still lurking in the background, checking the blog daily. Don't have much to say that already hasn't been said. I too, was dissapointed with the results of the bone marrow biopsy and the bone scan, probably not as much as you were but … I really had high hopes, as all of us did. I guess its all part of this rollercoaster that you’re on. It's got to be a job just trying to keep a positive outlook on things, and I’m sure you have your days, but you seem to be doing a great job of it. Keep it up.

Sue and I have been busy dealing with her father and his colon cancer. I think were starting to get some small sense of what you, Sue and the girls have been going through for the last year or so. He's at the point where he's trying to make the decision about chemo, radiation or doing nothing. Trying to explain all the options to an 86 year old German/ Russian farmer from Strasburg is a challenge to say the least. Maybe, I’ll suggest herbs, so if you find anything that works, let me know. I think that’s something he can at least understand.

As for my opinion on herbal medicine, I'd say go with it, especially if it makes you feel better. I've always been a big believer in herbs. As much as doctors like to think that they know what's best for you, we all have a lot to learn. The Big Guy has put everything here on earth that we need to take care of ourselves; we just have to figure it out.

I'm still trying to spread the word about the blog and was glad to hear Patty got in touch. I’m hoping some of the others get off their duff and post, if they haven’t already contacted you.

Take care
Howie