Good news for me Monday. I met with Dr. Alsina and all is going as hoped!
My M-spike has been cut in half, from 0.6 to 0.3. WHEW!
Honestly, I was starting to worry. Both about an unexpectedly shorter life–and spending much of my remaining searching from specialist to specialist for anything that could slow the advance of my myeloma.
Now, we all expect my M-protein number to continue to drop.
The plan is to go on a six week RVD cycle. Four straight weeks using Velcade and dex once a week, plus Revlimid daily for three weeks, followed by a week off.
At the end of each month, I will skip Velcade for the next two weeks. I will travel the hour down to Moffitt Cancer Center once a month for bloodwork. At the end of the second cycle, the plan is to meet with Dr. Alsina again to see if I can cut-back dosing and transition to maintenance therapy.
We will try sub-q Velcade again in the hopes side-effects at the injection site can be minimized.
Pattie would be more excited for me if she didn’t have to get up at 5 am this morning to prepare for today’s colonoscopy.
I don’t believe the clinic has WI-fi or a computer in the lobby, but I wanted to share the good news with all of you before I left.
Words cannot express how much all of your kind words, thoughts and prayers have meant to me! Thank you!
Feel good and keep smiling! Pat
November 22nd, 2011 at 7:53 am
Hi Pat! Long-time lurker here that finally felt the need to post. I’m so happy for your good turn of events after a trying last couple of months. Few could have remained as upbeat as you in light of the struggles not only myeloma but melanoma have brought you. Have a happy Thanksgiving and hopefully this good news allows you to relax during the holidays!
Cheers
November 22nd, 2011 at 8:28 am
Thanks so much, Justin! Are you a patient? Caregiver? Or family member of a multiple myeloma “victim?” Remember you (or other readers) can email your questions to me anytime at: Pat@HelpWithCancer.org.
November 22nd, 2011 at 8:54 am
Hi Pat,
Family member. Father diagnosed 4 1/2 years ago and just recently failed on Velcade after Dex was removed from treatment. We’ve run the gamut of all current available drugs and SCT back in 08′ was successful but only for a short time. Back to present: Dex was reintroduced along with every week Velcade (previously 2 weeks on, 1 week off) to attempt to buy some time while clinical trial plans were made.
Just like you we heard incredible (unbelievable honestly) news YESTERDAY that his M-spike had dropped almost 30% since the modified treatment (to below 1). Now we get to have a wonderful holiday season without the very real stress of clinical trial planning and availability.
Your blog has been a fantastic resource for our family and we wish you all the best.
Justin
November 22nd, 2011 at 8:56 am
pat,
so happy to hear this great news! thanks and i hope you know how much what you do to keep us informed of myeloma news and your own personal journey is appreciated. hoping to get you up to durham/chapel hill area to speak sometime. i am beginning treatment after thanksgiving, so the adventure begins!
thanks again and happy thanksgiving to you and pattie!
November 22nd, 2011 at 8:59 am
See… prayers and intentions and medical creativity do work!! So glad to hear this news and tell Pattie to take it easy after her ordeal today… yuck. I’m continuing to intend gooder (is that a word?) health news for both of you and a happier Thanksgiving knowing that the Green Door has been pushed closed for awhile.
November 22nd, 2011 at 9:58 am
Pat- Great news!!! Happy Thanksgiving!!
November 22nd, 2011 at 10:06 am
YEAH, so happy for you, have a great thanksgiving.
It is such a relief, I never realize how stressed I actually am till after I see the doctor.
I see the my oncologist in dec ,so I won’t start worrying till after Thanksgiving! Ha ha.
Christina
November 22nd, 2011 at 11:27 am
This note is just to give the rest of you hope. Last winter I got pneumonia. When treatment did not help me my doctor did some tests and said I had to be hospitalized immediately. After 4 units of blood, more tests were made. IGA was 7000, M-spike was 7. After 8 months of weekly chemo and a personal program of diet, exercise, meditation and imagery, 3 months ago I went off chemo with IGA below 400 and M-spike at zero. Last week blood lab showed the same results so the doctor said I was good to go for another quarter without chemo. Happy Thanksgiving.
November 22nd, 2011 at 11:36 am
I would love to come to North Carolina. Do you need a Millennium contact name/number to get the ball rolling? Good luck with you treatment… I understand how scary it can be! May be some unexpected and difficult side-effects. But most of us find a way to get through and continue to live active lives–I’m a good example of that.
November 22nd, 2011 at 11:37 am
Great news, there is always so much stress in waiting for results and so much relief in hearing good news. I’m happy for you.
November 22nd, 2011 at 11:38 am
Prayers are good. Funny, but I’m not a big prayer when it comes to “asking for favors.” I figure the big guy (or gal!) upstairs has plenty of other more important things to do. But I do pray in thanks from time to time… For a beautiful sunset–or a dropping M-spike! Thanks, Sandy!
November 22nd, 2011 at 11:39 am
Right back at you! It should be a great Thanksgiving–I’m cooking!
November 22nd, 2011 at 11:40 am
Good point, Christina! I was wiped yesterday afternoon for no good physical reason… I think the waiting, watching (and worrying) can take their toll on you physically…
November 22nd, 2011 at 11:42 am
I hear and read stories like yours all the time, Jack. Great news! I’m so happy for you… Typical myeloma patient–lots of hills and valleys–ups and downs. I hope your report reads the same next Thanksgiving!
November 22nd, 2011 at 11:45 am
Looking back to Justin’s comments… Just think–a simple thing like adding dex to a treatment regimen and good results followed. I’m glad your father responded so well and unexpectedly, Justin! How cool is that!!!
November 22nd, 2011 at 12:17 pm
Fantastic news!!
November 22nd, 2011 at 12:44 pm
Great news Pat. Can you have your blood work done locally to avaoid the big dive?
November 22nd, 2011 at 12:51 pm
Pat:
Very good news on your numbers now are radically reduced.
I’m now day+33 and I’m doing pretty well; my counts are slowly rebuilding and some times they’re up & down at this point. I’m walking on our street and the common grass area with my snow shoe poles to steady myself and Jenny my wife at my side.
Happy Thanksgiving to you and your family
Doug Smith
Bend, Oregon
November 22nd, 2011 at 12:58 pm
Right on, Pat!
As suspected, even thought mephalan did not banish the disease, it may have weakened its grip.
Going to be interesting to see if the RVD will push you even further down.
If you plateau or slip, a clinical trial using perifosine may be something to consider as it is not otherwise different than what you are doing now (e.g. if you get the placebo).
http://jco.ascopubs.org/content/early/2011/10/04/JCO.2010.33.9788.abstract
Very happy for you Pat. And happy for all of us who are cheering you on.
Danny
November 22nd, 2011 at 1:18 pm
GREAT NEWS, Pat!!!!!
November 22nd, 2011 at 1:43 pm
Happy to hear the good news. Can’t help but wonder how all of the treatment (RVD + Transplant) tie together. In any event, nice to see the arrow heading in the right direction.
November 22nd, 2011 at 2:04 pm
Your good news is yet another reason to give thanks for our many blessings! I do believe your Thanksgiving holiday will be a bit more enjoyable and have extra special meaning this year! Celebrating with you here in NC! Happy Thanksgiving!
November 22nd, 2011 at 2:06 pm
Hi Pat! The kicker (and the reason why I had mentioned it was unbelievable) was that he HAD been on Velcade with Dex for all of the Velcade treatment prior to the previous 2 months. He was taken off Dex (IMO for no good reason which I discussed at length with his oncologist) as he had no side-effects except the normal high and crash, and the numbers started to rise shortly after removing the Dex. Previous treatments had offered a similar time frame to disease progression so it was guessed that it would have risen regardless (which very well could have been true). So it was completely shocking to have it significantly lowered with a treatment regimen that the myeloma has already “seen”.
Anyways, enough about my family’s situation. This was incredible news for you and I don’t want to take anything away from it!
November 22nd, 2011 at 3:14 pm
Patricia, Richard, Doug, Danny, Nick, Ed, Linda, Justin… Did I forget anybody? Thanks to all of my dear friends for your encouragement and support! I appreciate the way all of my readers follow my myeloma journey. I have received a dozen emails as well. I’m touched, encouraged and motivated! Covering ASH in two weeks, my new book (I’ve already started a third) I can’t wait to get up in the morning! It’s easier without imminent disaster hanging over my head–and with love and support from so many. Much appreciated!
November 22nd, 2011 at 4:38 pm
Congratulations, Pat! It’s so great to hear good news. I’m at the UCSF Med Center at Day +1 of my stem cell transplant and will be going on the RVD regimen also as consolidation therapy.
November 22nd, 2011 at 4:56 pm
Pat,
Best news I heard all day!!! Believe it or not I went to the Clinic today and they took me so quickly they did not get my blood test results back before I left. I got VIP service today. Have a great holiday!
Mark
November 22nd, 2011 at 6:20 pm
So happy for you… I0m 32 y.o. and my numbers are increasing, but I’ve been in remission for 1 year.
Hope next control will be better also for me!
Greetings from Italy!
November 22nd, 2011 at 6:36 pm
Good luck, Ashok! Hope you don’t get as nauseous as I did…
Me too, Mark! Happy Thanksgiving!
November 22nd, 2011 at 6:38 pm
Wow! I just heard from someone in Sweden an hour ago. I hope your myeloma stays away for a long, long time, Nicola!
November 22nd, 2011 at 8:53 pm
I am so elated to hear the news Pat. Thank you for keeping us posted this will be a special Thanksgiving!!! Blessings to you Patti and your family mary louise
November 22nd, 2011 at 9:17 pm
Great news Pat! Have a wonderful Thanksgiving.
November 22nd, 2011 at 9:34 pm
What a weight lifted from you. Just wonderful. Maybe your SCT didn’t “fail” after all. Prepared your body to work with treatment again. I know you are smiling! Linda K.
November 22nd, 2011 at 11:34 pm
Mary Louise, Tim and Linda-
Thanks for the kind thoughts–and for reading! Linda, several other readers agree with you. My SCT may have softened-up the myeloma. Hope so…
November 23rd, 2011 at 12:47 am
Jack Goodman, Just wondering about your diet program, sounds intriguing, do you mind giving us a hint???
November 23rd, 2011 at 6:37 am
Wonderful news. So happy for you. Will keep praying. Keep on doing your good work in your special cheerful way.
November 23rd, 2011 at 8:21 am
Wonderful news! I keep praying.
November 23rd, 2011 at 9:45 am
You bet, Lileng! But no one I know does a better job doing that than you! Keep up the great work sharing your ups and downs on your blog…
November 23rd, 2011 at 9:45 am
And thank you, too, Venecia!
November 23rd, 2011 at 10:29 am
My docotr’s appointment was yesterday – also good news with the M-spike. I can definitely relate. Mostly I know the nite before if I am going to have good readings. Like the Shakira song says: Hips don’t lie. If my hips feel relatively pain free, this is a good sign. Myeloma struck in this area first 3 years ago and it was the canary that woke me up to the possibility of the disease. I am not sure what units they use in the States. They are different in Canada so its hard for me to compare or understand your numbers. The point is that your disease is under control. Every doctor’s visit when you are undergoing therapy is a stress and a reminder of how fragile the balance is between effective treatment and dreaded relapse. Be grateful for this time and take advantage of a wonderful Thanksgiving with your family.
Regards,
Debi Sheffield
November 23rd, 2011 at 10:49 am
So glad you are doing OK, Debi! Thanks for sharing… It helps!
November 23rd, 2011 at 11:09 am
Hi Debi. This comes up frequently enough that I thought I could figure out the conversion between US and other countries (Australia is normally brought up) methods. After spending several hours scouring the web (both journal articles and blogs) I couldn’t find a clear cut way to convert. It may be something that patients can ask their oncologists the next time they have an appointment because I’m sure they have to know how (or at least give a general range that an M-spike of 1.0 is similar to X) when reading journal articles.
The next appointment I have with my dad’s onco I’ll be sure to ask as well and will report back with findings.
November 23rd, 2011 at 11:17 am
Sam
I raise cattle here in Idaho so I know what red meat I eat is organically raised with no hormones. Same thing with chicken. No sugar where I can control that. Essiac tea. Organically raised canned tomatoes. Dried mushrooms. These are a few of the things I think helped in conjunction with chemo and even though I am off chemo right now, I will continue watching my diet. Probably as important is imagery. You must have a place within your mind you can visit daily and know that if you relax your body enough it has the power to heal itself.
November 23rd, 2011 at 1:58 pm
Jack Goodman,
Thanks for sharing this information with us.
My cousin is a macrobiotics diet specialist, and when the crown prince of Saudi Arabia was diagnosed with cancer, they hired her to prepare daily macrobiotics meals for him.
So when I was diagnosed, the first person I called was her, and her advise to me was to stay away from red meat, dairy products, sugar and processed food.
I drink a cup of Organic Ceremonial grade Matcha daily, and I mix Flax seed oil and Cottage cheese for breakfast, also a fresh squeezed glass of organic vegetable juice (carrots, beets, celery, tomatoes, broccoli, and a whole organic lemon) mixed with a teaspoon of organic green barley powder and suma roots powder for lunch.
And of course, Curcumin (3 times a day, 3000mg total), along with Vitamin D3(3000-5000mg), one Multi vitamins pill, 1000mg vitamin C, calcium and magnanimous pills, and a B12 supplement.
My wife learned how to cook Mediterranean dishes, so she prepares for me a variety of lentil, beans, and Chic peas dishes, along with a an incredible salad called Tabouli, just to name a few.
We need to give our body all the ammunition it needs to fight the enemies.
November 24th, 2011 at 9:37 am
I love hearing about the care so many of you take to live healthy, exceptional lives. I’m taking notes…
November 25th, 2011 at 7:07 am
I’M VERY VERY HAPPY FOR YOU!
November 25th, 2011 at 2:41 pm
Pat, I met you Monday in the BMT unit at Moffitt. It was truly heartening to see your transformation from pre-appt to post-appt. Your smile as you were leaving reflected the hope you regained from hearing your results. We share your joy and are encouraged by your victories. Our best wishes to you and Pattie.
November 25th, 2011 at 4:15 pm
How nice to hear from you, Kent! I enjoyed meeting you and your lovely wife. Sounds like you have also overcome a lot. Best of luck!
November 28th, 2011 at 11:13 am
Wonderful news…so happy for you!!! My hubby goes this week to see if M-spike is still 0. Had 3 months of RVD which was stopped at the end of March because of severe neruopathy..has just been able to walk again without a cane/walker in the last month. We’re praying for more time for his feet to get even better before having to start treatment again! Our faith is in the Lord!
November 28th, 2011 at 12:00 pm
So sorry about your husband’s PN. Mine is worse, too. Best of luck and keep us updated…
December 22nd, 2011 at 10:52 am
Pat…super news…best Christmas gift there is!
December 22nd, 2011 at 11:05 am
Hi Jodi! Nice to hear from you. I learn if my M-spike has continued to drop at the end of next week. We are hoping for more good news then…
January 11th, 2012 at 1:17 pm
Keep your spirit high. I was first diagnosed in November of 2009 with multiple myeloma. Was treated with Velcade, Dex, Aridia,as well as Revlamid and a host of morphine, antibiotics, vitamins, potassium, etc I then was treated with a very strong chemo (melphalan I believe was it’s name) just before stem cell transplant. My M-spke has been in minus territory for 16 months now. I pray and do everything I can to be positive. I think you must feel positive about your doctors and modern medicine. I take rrvd now and I have problems with neruopathy. The rrvd is much weaker than when I took it in conjunction with chemo. I take 10mgs everyday now and 6 hour aridia treatments once a month.
January 11th, 2012 at 8:27 pm
Thanks for sharing, Randy! FYI… 3 hours is plenty of time for your aredia IV. I have Revlimid induced PN, too–even though the company and a lot of docs say it isn’t possible.
January 24th, 2012 at 1:51 pm
Hello Pat,
I have read the latest news in your blog and I am very happy to know you are doing so well. I first read your blog in Januar of 2011 and am very happy to see the great changes. It is conforting to read about what others with mm are going through as well. It helps understand this chronic illness better specially from a patient’s eyes not the doctor’s.
I was diagnosed with mm on December 2010 and had an sct October 2011 and besides the nausea and voniting, loss of taste buds (which are back to nornal, thank God) the process was bearable. January 13th marked 100 days post sct; therefore, a bmb and mm labs were completed. I went for the results on January 20th and it showed no mm on the bone marrow but the M pike is at .300. My doctor gave me three options:
1. do a second sct
2. velcade treatmeny every other week
3. do nothing and see if the numbers go down on their own.
My first inpulse was to go ahead and have the second sct but I am still thinking and praying to make the right choice.
I do have a couple of questions for someone out there: if you did a second sct, how far appart from the first one did you get the transplant? How were the side effects compared from one another? Any imput would help.
Thanks to all, and may God bless you and keep you strong in this journey.
Mirna
January 24th, 2012 at 3:08 pm
First of all, I’m glad you are recovering nicely and doing OK. I’m not a big fan of immediately repeating the SCT, unless doctors can add something more to the high dose melphalan to help the second SCT have a better chance of success. And since most docs don’t know what to add–actually, no one knows, it is still very experimental–I personally wouldn’t go that route. And I didn’t–since I also had an M-spike after I finished. Actually, mine was worse than when I started. Bottom line is I would get a second opinion. Where are you being treated?
January 26th, 2012 at 4:12 pm
Thanks for your imput Pat. Even though my first reaction at the doctor’s office was to have a second sct, I have been leaning towards having chemo treatment but I am still asking questions. I was also recommended to go to Boston to get a second opinion.
I am being treated at Roger Williams Cancer Center in Rhode Island and like you said they stated there is no standard rule of treatment after first sct but there are many options. They just presented those three at this time.
January 26th, 2012 at 5:10 pm
I wrote an article about a second transplant a while back. Success rate is around 17%. That’s a lot of discomfort to go through for such a small chance of success… But if you decide to proceed, I’m great with that. Important thing is you are thinking it through…
February 7th, 2012 at 9:46 pm
Pat,
Great news! I would like to suggest that it was your “Good News Monday.”
I’ve been following your progress since I was diagnosed just more than a year ago with high risk / IgA MM. Five weeks ago at 90 days past my SCT, I was told that my IgA was 79 and there was no evidence of an M Spike. That now is my “Good News Friday”. Another blood test and my last Doctor’s appointment at Mayo Clinic in 3 weeks, before beginning the maintenance regimen now typical for those in the high risk category.
Best wishes, and many more “Good News” days.
Jim
February 8th, 2012 at 10:19 am
Looks like we have both gotten some good news lately! Monday or Friday–I’ll take it!