[RadiantTiger]

The beginning of a long journey

by RadiantTiger on Sun Feb 08, 2015 4:45 pm

Hello Everyone,

This week I was officially diagnosed with multiple myeloma. It was found because I was anemic (low hemoglobin). Fortunately, kidneys are working fine and only a couple of very small bone lesions. My energy level right now is still quite good. No hyper-calcemia.

Would not have guessed anything was seriously wrong. Plasma cell count in bone marrow is 52% though. M-spike was 2.1 g/dL (21 g/L). I guess I am grateful that they found it before my bones have been damaged more. And I'm grateful that there are treatments that might be able to help.

Starting Revlimid, Velcade, and dexa­metha­sone (RVD) treatment in 2 weeks. Won't that be fun.

Emotionally, it's like the whole ground of my existence is being rearranged. Working with a fair bit of fear and grief, but my in-depth mindfulness training is kicking in, so it kind of goes in and out like waves. I've had to limit my time on the Internet, because it's easy to go into overload. What a com­pli­cated disease! I have to have confidence in my future self to make good decisions and get the support I need - face the decisions and ToDo's of this month, and not worry too much about other decisions I will need to make in the future.

This site has already been quite useful. I actually guessed my diagnosis and what treatment my doc­tors might recommend before I met with them to get my bone marrow test results. (I had access to some of the test results online).

Thanks in advance for your support.

PS. I have chosen anonymity for the time being, as I'm likely to be talking about very personal matters here, including my healthcare team, whom I respect, but may have differences of opinion with, as I go down the road. FYI - 'Radiant Tiger' is a symbol of warmth, strength and vitality. In depth psychology, our relationship with the symbolic world is important. When I visualize tiger, I feel vitality.

[Cheryl G]

Re: The beginning of a long journey

by Cheryl G on Sun Feb 08, 2015 11:12 pm

Hello RadiantTiger,

So sorry you've joined the exclusive Multiple Myeloma Club, but I'm glad you've found this forum and that you've already benefited from it.

It sounds like you've already educated yourself extensively about the disease, which is great. As you've said, there is a steep learning curve, but knowledge about the disease and how it is treated has real payoffs in both the short and long term.

I assume you've seen the countless recommendations here in the forum to make sure you've consulted with a myeloma specialist, so I won't do anything more than just indirectly refer to that advice...

I hope you have a great response to your treatment, and I look forward to running into you regularly here.

Good luck!

Last edited by Cheryl G on Mon Feb 09, 2015 8:59 am, edited 1 time in total.

[Jewel]

Re: The beginning of a long journey

by Jewel on Mon Feb 09, 2015 4:56 am

It is long journey but you will be fine.

[MaryB]

Re: The beginning of a long journey

by MaryB on Mon Feb 09, 2015 11:12 am

For sure, it is a long journey, not always a happy one, but you must stay positive.

My husband's bone marrow percentage was 85%, his M-spike was 3.2 g/dL (32 g/L), protein was off the chart, as all his test results were. This was April 2013. He went through RVD (Revlimid, Velcade, dexamethasone) with no problems. First chemo treatment getting him ready for transplant did not make him sick, but he did lose his hair. Chemo for transplant, he was very sick.

That was May 2014. December 2014 he is in remission and doing great. He is 71 and does whatever he wants to do. He had some very bad days and enjoyed his good days.

I hope you have a good caregiver – they will be the backbone of your recovery.

[RadiantTiger]

Re: The beginning of a long journey

by RadiantTiger on Mon Feb 09, 2015 3:03 pm

Thanks everyone.

At my first appointment, they gave me a book on the stem cell transplant. Started reading it, but I had to put it down. Last spring I supported my ex-husband through a liver transplant, and it was a nightmare. I realized I still have some trauma around that experience. I'm going to join a local cancer support group. I'm not quite ready to hear 'transplant is your best option', even though I know there is science to support that. For now, I will just focus on getting through my first round on the drugs.

I am now starting to think about support systems. I'm single, but I have some wonderful friends in my life. My family lives about a thousand miles away.

[K_Shash]

Re: The beginning of a long journey

by K_Shash on Mon Feb 09, 2015 7:35 pm

Hello radiant Tiger,

I joined this "Myeloma Beacon" community recently, too; on December 17, 2014. I have already had a lot of valuable advice, particularly applicable for the RVD treatment and you may find it all in my Introductory Topic "About to start my Treatment...".

I, too, have remained anonymous due to personal reasons, trying to keep all this to very close family and to a handful of friends.

Yes, I sure hope this a "long journey" for all of us but it is becoming more like a manageable chronic condition and in my case the first indication of a potential kidney failure had me worried about the routine dialysis.

As to a stem cell transplant, depending on the risk factors and also on the individual patient's response, as I have stated in another topic (Stem cell Harvest at 68, why bother?), at least I am not convinced that it is a "must'. You would also get a lot of personal accounts and opinions in that discussion and also in PeggyB's topic: How did you decide to have an ASCT or not?

I have written the above Topic names from memory and you may have to do a little research to access the exact thread.

The following is a quick recap of what helped me a lot over the past 8 weeks of my RVD induction phase treatment:

1. The air bubble technique for the Velcade shot to avoid the severe 'burning and itching'.
2. Benadryl on the dex day and the day after to help me sleep
3. Avoid sugar and coffee on the dex day and day after
4. Eat a heavy breakfast before taking the weekly dex
5. Try and get your oncologist to make sure the weekly dex dose is optimal, the same goes for the Revlimid. Mine is 20 mg dex and 15 mg Revlimid. The Velcade is given per a standard formula. Dr. Heather Landau, one of the contributors to this discussion and another prominent myeloma specialist that my physiscian wife works with, both have stated that a 12 mg - 16 mg dex should be adequate and I plan to take this up with my oncologist at my appointment, in a couple of days.
6. Stay physically active and stay hydrated. I managed to play a round of golf 3 or 4 times, 5 or 6 days after the dex-Velcade Wednesday.
7. Avoid crowds, definitely wear the 'patient mask' in the hospital (too many coughs, sneezes and other sick patients that may be carrying different infections).

I sincerely wish you have the best response to this RVD treatment (my Kappa chains dropped from 1,070 to 127 in 4 weeks; as good as can be expected. I will know tomorrow what the latest blood test shows, hoping for another 90% drop and hope to be in the normal range) and that without any major side effects.

I am still coming to grips with the realization that at least the maintenance treatment is something I just have to learn to live with. And as MaryB has stated, myeloma patients do have good and bad days, particularly during the induction phase.

K_Shash

[RadiantTiger]

Re: The beginning of a long journey

by RadiantTiger on Tue Feb 10, 2015 2:18 pm

K_Shash - re:

Try and get your oncologist to make sure the weekly dex dose is optimal, the same goes for the Revlimid. Mine is 20 mg dex and 15 mg Revlimid. The Velcade is given per a standard formula. Dr. Heather Landau, one of the contributors to this discussion and another prominent myeloma specialist that my physiscian wife works with, both have stated that a 12 mg - 16 mg dex should be adequate and I plan to take this up with my oncologist at my appointment, in a couple of days."

I am still coming to grips with the realization that at least the maintenance treatment is something I just have to learn to live with. And, as MaryB has stated, myeloma patients do have good and bad days, particularly during the induction phase."

Do they typically start you out on the 'highest' dose for your weight-class, and then adjust it down based on your side-affects? Don't have confirmation of what they are starting me on, but I think it's 40 mg dex and 25 mg Revlimid. (At least the Revlimid company rep told me they had ordered the 'highest' dosage).

How much time off do you get between blocks of treatments? Like, do they treat you for 3 months and then give you 3 months off?

Thanks.
RT

[K_Shash]

Re: The beginning of a long journey

by K_Shash on Tue Feb 10, 2015 3:07 pm

Hello Radiant Tiger,

I have read a lot of accounts where the new myeloma patients were apparently prescribed the high doses and their oncologist (or the myeloma expert) brought them down only after the patients complained of severe side effects. As I stated in my prior posts, I have to thank my oncologist for prescribing the 15 mg Revlimid (3 weeks on 1 week off) and changing the oncology pharmacy's 'off the shelf' standard prescription of 40 mg dex (once a week, every Wednesday, in my case) to 20 mg.

I am completing my 8th week of this treatment today and I have managed well with minimal side effects. The only major side effect: my Revlimid was stopped on the 19th day in this cycle due to a body rash and I think my oncologist must have decided that that was an 'easy recommendation' at this late day of the 21-day treatment, rather than having to arrange an appointment and check it.

At the same time, I have had near ideal response to the treatment and I have been waiting today to see if my lab report from yesterday's blood tests is going to show my kappa free light chain (FLC) parameters down in the "normal" range. The tests showed that I had a near 90% drop in that reading just after 4 weeks of treatment. IF I get a similar 'geometric progression - like' drop of another 90%, my kappa number would be 'normal'.

I believe some other patients have had similar response in 2 or 3 4-week cycles. It may have something to do with mine being a 'trisomies only' standard risk myeloma, per the mSMART guide.

All this would indicate that my treatment has been effective and with tolerable side effects.

I am asking my oncologist if I could drop the dex to 12 mg or 16 mg because I experience notable agitation throughout the day and the day after when I take this 20 mg dex.

I am not sure how much of this may have to do with my weight being in the 125-130 lb (57 - 59 kg) range. I did not find anyone else mentioning their weight along with their Revlimid and dex dosage. However, many had to have their dosage of these two drugs brought down to my levels after experiencing severe side effects.

I think that there is a problem in starting out on high doses; first you have to contend with severe side effects and, secondly, one may develop intolerance to these very effective drugs and may have to exclude that option from the future treatment.

Please discuss your concerns with your oncology team. In my case, I am glad that my oncologist didn't just 'rubber stamp' the pharmacy's 'standard prescription'.

Sincerely wish you a speedy and Complete Response.

K_Shash

P.S.: Apparently, a lot of clinical studies conducted 3 -5 years ago all seemed to have used 40 mg dex as a 'standard dose' and the newer studies may have shown that 8, 12 or 16 mg does an effective job.

[RadiantTiger]

Re: The beginning of a long journey

by RadiantTiger on Tue Feb 10, 2015 3:23 pm

Thanks K_Shash. Congrats on your excellent response to treatment!

I think I will move this dosages discussion to the 'Treatments and Side Effects' section of the forum. It is a complicated medical discussion. Thanks for sharing the details of your ex­per­i­ence.

RT

[Mildred]

Re: The beginning of a long journey

by Mildred on Wed Feb 11, 2015 11:38 pm

On a lighter note, since it seems the medical aspect has been covered, I love your name! Hope that made u smile "radiant tiger"!