[K_Shash]

Induction therapy to maintenance therapy - a transition

by K_Shash on Mon Aug 10, 2015 4:30 pm

Hello everyone,

I have been writing a detailed and a very personal account of my experience and response to the induction therapy since mid December 2014, under the topic:

K_Shash's RVD induction therapy experience

Last week, I wrote a conclusion (of the induction phase) as my last post under that topic, and I think it would be better to start writing about my progress / 'living with this incurable disease' under a new topic with a more appropriate title. I think this "transition" ('tapering,' as my on­col­o­gist calls it) may take a few months before I settle into a true "maintenance" phase.

Another reason to start reporting on this topic is that there are a couple of interesting de­vel­opments to note:

1. The "eyelid heaviness" that I was experiencing for the last couple of months, and which was getting pretty painful and lasting for longer and longer duration, is GONE!! I really did not even think of this syndrome till I just started writing about the changes I have ex­per­i­enced since stopping the Velcade shots. I had the last Velcade shot on July 29th. Therefore, I have really been off of Velcade for only 12 days. I think I already have had 2 or 3 days without the heavy eyelids!
    
2. The fatigue level: I was almost exhausted after about an hour-long standing around and doing house hold chores and a 100 mile (160 km) round trip driving in a fairly smooth weekend traffic on Saturday. I took it quite easy on Friday and I was quite surprised that my endurance level was so low on Saturday. However, I was almost as energetic on Sunday as I used to be during the first 3 cycles of my induction phase! I managed to work on some light wall repairs, sanding, and painting as well as some floor and window cleaning. I did drive approximately 50 miles (80 km) in the evening and the only com­plaint I had was a slight soreness in my calves. That was fantastic and I feel a lot better today. I am not going to venture outdoors due to a strong breeze, but I feel no fatigue and I have had no urge to lie down.

My oncologist will monitor my blood tests that will be repeated every 4 weeks, and IF all is well, and IF my kappa free light chains (FLC's) and the kappa-lambda FLC ratio are both steady or improving, he plans to drop the dex and again monitor my markers (kappa and K/L) before reducing my Revlimid to maybe half the current level.

Can anyone on a long term maintenance give me an insight into what their drug regimen is? It would be nice to know that in comparison to the induction phase drug regimen. I thought that I should continue with at least a much reduced dex (8 or 12 mg once a week, compared to my current 20 mg once a week) to enhance the effectiveness of the maintenance-level Revlimid.

In the meantime, I am happy because: No more weekly pre-Velcade blood tests and no more weekly long drives to the chemo lab and no more Velcade shots and of course no more Velcade side effects (extended fatigue, heavy eyelids, etc.). Of course, I am sure my successful induction therapy, which included Velcade as a major medication, proves how effective this drug is in treating multiple myeloma.

K_Shash

[K_Shash]

Re: Induction therapy to maintenance therapy - a transition

by K_Shash on Thu Aug 20, 2015 9:56 am

Weekly Update:

The only major change has been that my taste for salt has returned, almost normal.

The sudden 'crash', 48 hours after the dex dose, is still abrupt, and the thigh and calf muscles sud­denly weaken and stay that way for the rest of the third day. I have to lie down for hours or use an ottoman to raise my legs.

K_Shash

[K_Shash]

Re: Induction therapy to maintenance therapy - a transition

by K_Shash on Wed Sep 09, 2015 10:27 am

September 9, 2015:

After a month without the weekly Velcade shots, my Kappa rose slightly to 15.9 (from 13.2 4 weeks ago), and the K/L ratio rose to 1.64 from 1.35. Though both the readings are still in the normal range and the change 'not significant', according to my oncologist, it is worrisome that the downward trend in my Kappa (reading dropping from 20.9, 15.7 to 13.2 over the previous 3 cycles) has reversed as soon as the Velcade shots were stopped.

I have not felt the "heavy eyelids" syndrome since the last post. A definite cause and effect co-relation with the Velcade.

The improvement in my endurance is very slow, and I contacted a stomach infection (causing nausea and general weakness) last week, making it harder to conclude anything yet. The first thought was that the Revlimid or dex was causing the nausea and weakness. The stomach virus gave me a slight fever, a whole body ache and left me feeling nauseated and weak for most of the Labor Day weekend. Bummer!

The other myeloma expert we know continues the induction treatment for my type of IgG Kappa myeloma till the Kappa is brought down to low single digits.

Only my monthly (every 4 weeks) blood tests would show if I have achieved the progression-free SCR in a few more months.

K_Shash

[K_Shash]

Re: Induction therapy to maintenance therapy - a transition

by K_Shash on Thu Oct 01, 2015 10:39 am

October 1, 2015

I had concerns about the effectiveness of the maintenance doses (I am only in a 'transition', about 8 weeks after the Velcade shots after the last one on July 29) because of the rise in my kappa and K/L ratio about a month ago. However, the latest results from the blood test seemed to indicate 'all is well and on track'. My kappa which rose from 13.2 to 15.9 dropped to 12.5 and the K/L ratio which had increased from 1.37 to 1.64 dropped to 1.17!! These results are the 'best ever', since these tests were first conducted in mid-November 2014. May be the kappa drops below 10 during this 'taper / transition' phase??

Of course more data points are needed, and I am hoping that my oncologist would soon taper down the 'therapy' by removing the dex completely, IF the next test shows stable or improving results. Another 4 weeks of 'wait and see'! And I have to be prepared for higher numbers from the next test, too. I have been told that these levels of K, L and K/L can bounce around at these levels and the slightest infection can make them go up. I have been advised to delay the annual flu shot, too. As I may have noted, I could only find one article on the web about the "dead virus" flu shot causing a 25% jump in kappa.

Last 3 weeks, since my last post here, I seem to have steadily improved my resistance to the allergens outdoors. Funny, how I can feel the difference! Therefore I have been able to take more walks in the great outdoors.

I had a severe back spasm / pain in my lower back on the left of the spine, just above the hip bone a week ago when I was only getting up from a reclining position. I did have a heavy meal for a late lunch and I still do not know if the pain was because of a 'pulled muscle'. That pain lasted for about 5 minutes and rubbing some soap on that area seemed to help a lot. It did not affect my packing and transporting half a dozen fairly heavy bags to and from our other place. However, I had another more painful and longer lasting episode of the same pain on Saturday night when I was pulling off my tight socks at night after a pretty heavy meal. I could not even sleep on my left side as this area of my lower back was sore all night and the next morning. All was well after a warm shower in the late morning, though.

With all the concerns about myeloma and the side effects of the medication, I am trying to get my lower back x-rayed and rule out any new bone lesions or any growth of the old ones.

The heavy eyelid syndrome seems to be completely gone. However, there is no change in the dex side effect: feel hyper for about 48 - 60 hours (I still need Benadryl to help me sleep on the first 2 nights) followed by a crash (drowsiness and exhaustion) for a day and a half. My oncologist advised me that the effectiveness of dex is dosage dependent and left the 20 mg weekly dose alone. He is also against spreading o the dex dosage: 16 mg on Wednesday and 4 mg on Friday. Apparently, the other side effects of dex can be far worse if the dosage is spread over a few days during the week. I am following this advice quite strictly since everything is working so well. I just hope I can get away from the dex.

I seem to be tolerating the 3-weeks daily and 1-week off Revlimid dosage quite well. I do not seem to experience any noticeable improvement in my stamina during the off week (the dex is taken every week and its side effects may be blurring Revlimid's). I am already well prepared for the 'life long' or 'till the kingdom come' Revlimid maintenance, as Mike B's oncologist had advised him. My current dose of Revlimid may be the maximum my body can tolerate as I had two episodes of minimal Revlimid rash toward the end of its 3-weeks on period.

K_Shash

[K_Shash]

Re: Induction therapy to maintenance therapy - a transition

by K_Shash on Wed Oct 28, 2015 5:06 pm

October 28,2015

Fortunately my back pain is completely gone. Now one can conclude that it was caused by a muscle sprain, likely made worse by the severe muscle spams and cramps I used to get on the day after I took the weekly 20 mg Dex. I am so glad that I can now say all this in the past tense; "Thursday, the day after I was taking Dex..".

I got the latest Blood Test results (every 4-weeks) this morning and they were a bit better overall than the last (Sept. 28 Test) results: Kappa was 12.6 Vs. 12.5 but the Lambda reading rose 12.1 from 9.72 and therefore, the K/L Ratio came down to 1.04 from 1.117. I had already asked my Oncologist / Hematologist if I could drop the weekly 20mg Dex, IF and only IF my Blood Tests were good again. This is the third time after dropping the Velcade shots that I have had good (Normal) readings. I waited for my HemOnc's blessing and avoided the Dex for this week that was scheduled for this morning.

I was quite anxious about this week's Blood Tests since I had a sore throat early last week followed by 3 evenings of Low Grade Fever (about 1 or 1.5 degrees above my normal 97 degree body temperature). Apparently this common cold that I must have picked up at a large party did not affect my Kappa and Lambda readings. The Flu that I had in March (temps shooting well over 101 and spiking around 103 degrees in the ER) sure had my Kappa and Lambda shoot up and cause at least a 2-cycle delay for my response to the VRD treatment to get back on track. It seems that ten (10) months of the Dex must have had some cumulative effect; I seemed to be getting a lot more tired after the Wednesday Dex wore off on Saturday and seemed to be all sore for the rest of the week; all the way to the next Dex dose. Earlier in the Treatment, I had at least two and sometimes three good days when I felt I had 'normal' energy level and endurance and I could easily play a round of golf on Sundays. Therefore I have been eager to get off the Dex.

I am sure it would take at least a couple of weeks before I can feel more energetic again. I will be starting my 12th Revlimid Cycle (3 weeks ON and 1 week OFF) today. I believe that if all my Blood Tests (repeated every 4 weeks) continue to show good results and I remain in Complete Remission ( for all practical purposes, though I do not want any Bone Marrow Biopsy to confirm it), my Revlimid dose would be dropped after 3 or 4 cycles. I continue to take the Acyclovir to prevent Shingles and a Low Dose Aspirin for Blood Clot Prevention. My HemOnc specialist recommended that my RVD doses would be 'tapered' to Revlimid only Maintenance Levels after the initial Induction and that strategy is working well.

After all the side effects of the Dex wear off in a couple of weeks, Revlimid would be the only drug I can blame any future side effects on. I will be extra careful with the 'compromised Immunity level', though. I am not sure if I had the sore throat and a slight fever last week because I had not been too careful about wearing a face mask while doing some light yard work.

K_Shash

[mikeb]

Re: Induction therapy to maintenance therapy - a transition

by mikeb on Wed Nov 04, 2015 4:52 pm

Hi K_Shash,
Thanks for the update. Sounds like things are continuing to go well for you, for the most part. Congratulations for graduating off Dex. I know you're happy about that, and I don't blame you!

Best wishes to you for everything to continue to go smoothly for you.

Mike

[TerryH]

Re: Induction therapy to maintenance therapy - a transition

by TerryH on Thu Nov 05, 2015 11:41 am

Thanks for these updates, K_Shash. They're very useful. Like Mike, I'm glad to hear that you've been able to go off the dex. Who knows, maybe you'll decide to go off the Revlimid as well?

Good luck!

[K_Shash]

Re: Induction therapy to maintenance therapy - a transition

by K_Shash on Thu Nov 05, 2015 12:40 pm

Getting OFF dex is no picnic:

About a day or two after what would have been my dex Wednesday, my arm muscles started hurting, while at rest. Lifting my arms above my shoulders became quite painful. I looked up the discussion on the topic "Muscle pain after stopping dexamethasone" (I have not taken any Zometa injections.)

However, unlike a few accounts in the referenced discussion, I did not experience any pain in my legs nor have I had any cramps (which I experienced on the day and on the day after the dex Wednesdays). I had no pain or fatigue after walking a couple of miles on the weekend! It again shows how each one of us can have different reactions to these drugs, when we start or stop taking them.

Anyway, a 500 mg Tylenol (acetaminophen / paracetamol) dose helped a lot, particularly when the arms started hurting after a meal. I wonder how the 'withdrawal' from dex caused problems with the blood circulation, mainly to my arms. Eating small portions at a time but more often also seemed to help the sudden pain (after a regular meal) in my arms, too.

Finally last night, exactly two (2) weeks after my last dex, I was able to lift my arms without much pain and I managed to do a reduced exercise routine: a few stretches and light push ups. Even that may have been a little challenge for the muscles. But I did sleep well last night (I had some difficulty sleeping over 5 hours, likely due to the lack of physical exercise). And I am feeling quite well this morning: no sore muscles and I managed my lighter exercise routine.

I think / hope that this muscle pain (arms only) will be completely gone within a couple of more days.

I will post my experience in the above referenced 'Muscle pain after stopping dexamethasone' discussion, too. That discussion on this topic was very helpful to me.

Thanks for your best wishes, Mike. May be that is exactly what I needed to start feeling better!

K_Shash

[K_Shash]

Re: Induction therapy to maintenance therapy - a transition

by K_Shash on Tue Dec 01, 2015 11:47 am

Induction to maintenance transition: 12.1.2015

The muscle pain in my shoulders and arms doesn't seem to go away. It seems that I just have to get used to this Revlimid side effect. To make matters worse, I developed a pretty nasty rash on both my legs on the 11th day of my last 21 day on (followed by 7 days off) Revlimid cycle. Stopping the Revlimid for a couple of days and a few days of Benadryl seemed to have taken care of the rash. My oncologist changed my Revlimid to the maintenance level (half of what I have been taking) and advised me to take an antihistamine as needed for the rash. The weekly dex must have been useful in some ways and was neutralizing some of these nasty side effects of Revlimid.

The latest blood test results showed my Kappa level rising to 19.7 (from 12.6), just above the 19.4 "High Normal". The K/L rose to 1.56 (from 1.04). Some negative impact of the reduced Revlimid dose and the stopping of eex was to be expected. There was a 20% jump in my Kappa and in my K/L ratio a month after the Velcade shots were stopped. A few more data points from the monthly blood tests will let my oncologist decide if any changes need to be made to my "maintenance dose" of Revlimid and if a small amount of weekly dex would help bring down the Kappa level. However, my oncologist seems reluctant to add even a small dose of the weekly dex to my maintenance regimen. There is already a lot of discussion in our forum about this topic, dex being part of the maintenance and the current trend seems to be for Revlimid only maintenance.

The latest blood test results were available the day before Thanksgiving, exactly a year after my myeloma was discovered by a similar blood test. My (IgG Kappa and trisomies only, standard-risk) myeloma seems to be completely under control, thanks to a timely detection and thanks to the medical research and thanks to the novel rrugs available to us. The maintenance treatment and its side effects are a small price to pay for keeping this myeloma under control.

On a personal note, we had a great Thanksgiving weekend. Both the grandsons were free of any infection after almost 5 or 6 weeks of coughs and colds and in spite of their visit to Disneyland a few days before Thanksgiving. It was gratifying that both of them were equally eager to spend time with us after a long lapse. Heartwarming to be missed by those two munchkins!

[Ellen Harris]

Re: Induction therapy to maintenance therapy - a transition

by Ellen Harris on Tue Dec 01, 2015 2:36 pm

Kshash,

I wanted to share my experiences with maintenance:

Diagnosed April 2014. IgA kappa light chain. RVD until 9/14 with CR. Then SCT October 2014 with SCR. RVD maintenance begun 3/15, (Velcade subq biweekly, 5mgs. Revlimid 21 day cycle, 12 mgs. dex with the Velcade, biweekly.) Reason for full RVD maintenance is chromosome 1 addition. Some myeloma specialists believe this is high risk.

September 2015, suffered severe muscle pain accompanied by widespread muscle cramps. Muscle pain in chest finally sent me to the emergency room. Had elevated CPK (1500.) Ruled out heart attack. Oncologist said highly unlikely that any of the drugs caused the muscle pain, but did take me off all maintenance for about 2 months. Pain resolved with time/physical therapy. I am back on maintenance, (11/15),with the exception of Revlimid, and seem to be tolerating dex and Velcade so far.

I think the drugs DEFINITELY caused the muscle pain, regardless of what my oncologist says. I just think there haven't been enough data collected or studies done on this particular side effect, so he didn't want to attribute it to the drugs. Perhaps it is not common, but we all know about the muscle cramping, that's for sure. Not so different from diffuse muscle pain, really.

I had a lot of problems tolerating Revlimid, mostly of a GI nature. I also had transient rashes, even on the 5mg dose.

Everyone responds differently to these drugs, that is for sure. I am also a small person, (5'1", 118 pounds). Sometimes I think that standardized doses can overwhelm us smaller folks. I know from your postings that you are also on the small side, Kshash. Maybe that is our problem! We need to grow!!

I hope you have continued good response to therapy and are able to tolerate any side effects you experience!