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Re: K_Shash's RVD induction therapy experience

by Lovey on Fri Jan 09, 2015 4:19 pm

You seem to be doing very well, and I think that all oncology nurses who administer the Velcade injections should know about the "bubble effect."

You had mentioned the bone marrow biopsy. After enduring my first one, I told myself NEVER again with just local anesthetic. Since then, I've had all biopsies done under sedation with the wonderful drug propofol (Diprivan) - am "out" for a few minutes, don't feel a thing, and am happily on my way.

Best Wishes

Lovey

Re: K_Shash's RVD induction therapy experience

by K_Shash on Tue Jan 13, 2015 12:48 pm

Thanks Lovey.

Yes, I think I am holding up well but starting to see a slow but steady drop in my stamina and enthusiasm for physical activities. This seems to be in line with the latest blood test results after almost a full 4 weeks of RVD.

In general, I think my side effects have been tolerable. This is partially because my chemo dosage was well tailored for me, and also because I got a lot help from many myeloma patients to help minimize the Velcade rash and with simple things as using Benadryl as the occasional sleep aid. Thanks.

I brought a nasty sinus and eye allergic reaction upon myself by trying to play golf in very stormy dry weather with nasty allergens floating all around us for two hours. I recovered in about a week only because all the chemo effects had not affected my system yet.

Here is the log of my last few "missing days" from my personal journal. Today is Day 28, and I plan to give only the weekly updates to make the rest of this log fairly concise.

Day 22:

I did my push-ups early in the morning along with the squats and other stretches, since I had all the energy in the world. But dex would be changing that. Dex in the morning, with the aspirin and acyclovir, around 8:00 a.m. Ate a big sandwich about that time and braced myself to slow down. I felt all hyper while driving to the chemo clinic.

The Velcade was administered by a different nurse, and she agreed to use the air bubble technique (so far, 3 out of the 4 nurses who gave me this shot were unaware of this technique; now they know). The pleasant surprise was that the next week's blood test is going to include the kidney function (GFR) and kappa lambda chains. Therefore I would know if this therapy is making an impact when I meet my oncologist on Tuesday afternoon. He said that I don't need any urine tests because all the 'markers' that he needs to check are all in the blood. My guess is I should see 70% to 80% drop in the kappa every month. That would bring the kappa at 1,000 to about 250, 62 and 15; if the improvement is on that geometric progression, with 75% drop each month. Others have seen all that in 2 month,s and I hope I am one of them.

I had to take 2x25 mg Benadryl around 11:00 p.m. and got a good night's sleep.

The eye is perfectly normal, the stomach is calm and no more bleeding, but the nose still runs and occasionally I have a dry cough. Benadryl lets me sleep through all that, but I have had the nasal congestion for a couple of hours in the morning. Not a big problem.

All in all, the last 3 weeks are following the same pattern. I have adapted to the dex. I am convinced it is not the Velcade because I take the dex around 8:00 a.m., I get the symptoms around 9:30 a.m. and the Velcade around 2:00 p.m. I am already jittery and very irritable while driving the 25 miles to the chemo clinic and can feel the chest pounding if I walk at my normal pace for more than 50 steps. Then the range is 200 paces on Thursday, 500 paces on Friday and by Saturday evening I can walk miles.

The next few days would be a new experience because the Revlimid is stopped till next Wednesday.

Day 23:

All is well. Eye and digestion perfectly fine. No diarrhea, no rectal bleeding, just minor nasal congestion. Did my mild stretches. I walked 100 paces while re-warming my coffee in the microwave and I could feel that I was reaching the limit of my stamina (before the pounding in the chest) and stopped. The Velcade rash is not itching or bothering me, at least yet.

We had a nice Chinese dinner on the way to S.F. and I had a good night's sleep on a small dose of Benadryl.

Day 24:

A quiet Friday in the city. Bright and sunny day in the city! Had some leftovers for breakfast. I kept myself busy with some computer gadgets and a few puzzles. I was still feeling tired on this third day after Velcade. We went out for a short walk for groceries at dusk and I managed to tolerate a light breeze on the way back. We had a nice pizza-beer dinner. I still had a slight allergic "cold" and slept well with another small Benadryl.

Day 25:

After the morning outing for the dim sum, I did not feel like going for a walk till later and watched most of the football playoffs. I did not feel like going out for an early afternoon walk. However, it was quite breezy by 4:00 p.m., and I did not go out at all. I had a big clam chowder with toast, and avoiding any exposure to the elements may have helped my allergies. I slept well without any Benadryl.

Day 26:

I woke up quite refreshed and without any trace of my nasal congestion. My stomach was calm, too. I ate only a very mild rice with yogurt for breakfast and we did manage a 1-mile round trip walk around noon. I watched more NFL playoffs and had a big dinner on the way home, avoiding any shrimp cocktail sauce. I could only finish half the meal, though. I had a little very localized pain on one of my left ribs and only when I inhaled hard. Pressing on that spot did not cause the same sensation.

I was able to stay awake till 10:00 pm. to watch the TV and slept well again without the help of any Benadryl.

Day 27:

I woke up quite refreshed and had no stomach or sinus problems at all. I sent an email to my oncologist about my rib pain and asked if it should be x-rayed. I asked if that could be done while I was at the lab for my blood test, as the x-ray lab is right next to the blood testing. I had to wait for the Revlimid to be delivered by Fedex and then went for my blood test. I checked with the x-ray lab next to the blood work lab. They did not have any x-ray orders for me. I took a 1-mile round trip 'fast walk' and felt quite energetic but some further reduction in my stamina.

Later in the day I got a call postponing my oncologist's appointment to Wednesday, the day of the Velcade shot. The oncology staff nurse agreed to call me with the kappa and lambda light chains, and free light chain ratio results tomorrow, when available.

The blood test results showed that my HGB, RBC and WBC have dropped to 11.8, 3.71 and 3.4, respectively, and all a little below the low "normal". I hope I can tolerate this induction chemo for 12 weeks, if necessary. Hoping to have acceptable results in 8 weeks.

I was quite tired and sleepy and could not stay awake past 8:30 p.m. to watch the last quarter of the college football championship.

I checked my email in the middle of the night and saw that my oncologist had replied that the x-rays don't show anything and my painful rib do not have anything to do with the chemo.

Day 28:

I got up with a good night's sleep and no 'head or nose cold'. No diarrhea or constipation. Only worried about being borderline anemic and also about what the next 4-week treatment is going to do. Otherwise, today is the "high point" of my week before tomorrow's dex around 8:00 a.m. and Velcade in the afternoon. I also have the monthly follow-up with my oncologist, if he is back in the office (after being sick; mask time for me).

K_Shash
Name: K_Shash
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 2014
Age at diagnosis: 67

Re: K_Shash's RVD induction therapy experience

by K_Shash on Wed Jan 14, 2015 3:11 pm

Day 28 (continued):

Most of the day was pretty uneventful. I did not get the usual energetic level on this 'day before dex and Velcade'. It is likely due to the significant drop in my hemoglobin. But I am eating well, doing all my stretches and other exercises, and beginning to walk 100 pace spurts around the house.

Slept only 5 hours.

Day 29:

I had a big concern about the postponed oncologist appointment today because the appointment was canceled for yesterday due to his being sick. Finally got to confirm that another oncologist on their team would see me. This is a 'must' before the chemo nurses can give me the Velcade shot.

Just after that I finally got the kappa free light chain results!! The kappa reading came down from 1,072 to 127, a drop of over 88%. In a geometric progression, another (similar) 88% improvement should bring this reading to around 15, within the normal range, after 4 more weeks of this treatment. At least that is what I am hoping for. This may make it possible to go on the maintenance therapy in another month!! Great news, indeed.

I took my 20 mg dex with a big breakfast and I am taking it quite easy. This may have helped slow down the onset of any 'jitters' ... so far. Early post on this day, but I am on the way to the oncologist's appointment and the Velcade shot.

If the pattern repeats itself, I will post updates on a weekly basis but try and break down any developments by the days they occur on.

K_Shash
Name: K_Shash
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 2014
Age at diagnosis: 67

Re: K_Shash's RVD induction therapy experience

by Ian on Thu Jan 15, 2015 5:08 am

Congratulations on the drop in your kappa light chains, K_shash. I hope you continue to respond well to your treatment and that the rest of your lab results show improvement as well.

Ian

Re: K_Shash's RVD induction therapy experience

by Cmouli on Sat Jan 17, 2015 11:01 am

Dear Mr. K_Shash,

I am so delighted to see the numbers. This is really good. My families best wishes for your speedy recovery.

Anu

Cmouli
Name: Cmouli
Who do you know with myeloma?: My father
When were you/they diagnosed?: Nov 4, 2014
Age at diagnosis: 78

Re: K_Shash's RVD induction therapy experience

by K_Shash on Wed Jan 21, 2015 1:12 pm

Week 5:

As I get settled into the routine of the chemo, I would like to start with a few observations:

  1. I accidentally found out that even the 15 mg Revlimid makes me quite drowsy. I will continue to take it at night, just before bed time.
     
  2. I have found that the 'agitated' state I experienced after the 20 mg dex can be avoided, in most part, by taking the dex with a heavy breakfast. I also started doing all the daily exercise for that day in the early morning and skip all exercise (except for medium pace walking in long loops) and also skip the morning stretches and any exercise on the day after dex-Velcade.
     
  3. I had drastically cut down on my sugar intake, particularly the 3 tsps in my morning 3 mugs of coffee. I have now changed that to using sugar substitute only on the day of and the day after the dex dose. This seems to help me regain my enthusiasm and stamina a bit quicker from the third day after the dex dose.
     
    Also, Cmouli referred me to the following link:
     
    http://www.euro-med.us/cancer-treatment/insulin-potentiation-therapy.cfm
     
    that indicates that the sugar may actually help enhance the effectiveness of the chemo therapy, in a smaller way, like the dex is supposed to do.
     
  4. I am not sure how much lower my maintenance dosages are going to be. I hope I can get the Velcade shot every other week or less frequently and the dex down to 10 mg, once a week, and Revlimid to 5 - 10 mg daily (3 weeks on and one week off), have negligible side effects, and resume my active life.
     
  5. My very personal opinion has been that, though one may live to be 100, it is hard to 'smell the roses' if one starts losing the sense of smell with age. In most cases, one starts losing one's mind / brain (we have a number of Alzheimer's cases in the small circle of our family and friends; all suffering after reaching 85 - 90) after 80 or 85. Therefore, I value my next 8 -12 years the most, at the end of which I would be 80. I plan to make my treatment choices accordingly.
Week 5 (continued):

The week is going very well so far. I have concluded that the interim 10 days of 'fatigue and lethargy' were caused by the allergic reactions, stuffy and runny nose, and an allergic eye infection. I have to watch how much I exercise and how fast. I have to also avoid all the sources of any viral infections, too, and carry the patient's mask everywhere I go, particularly in the medical facilities, where the viruses and other infections carried in by other patients are always present.

The latest tests showed:

My kappa free light chains came down from 1,072 to 127 after 3 weeks and 5 days into this induction phase. I hope to be at the complete remission levels in 3 more weeks but I am not even sure what those are!

My urine protein has already come down from around 200 mg/dL to 9.9 mg/dL, protein / creatinine ratio came down to 0.1 from 2.0; both after 4 weeks and 4 days.

Would my hemoglobin, platelets and WBC's / RBC's get back to normal when I am on the maintenance dosages of these chemo drugs?

I would appreciate if anyone can comment on that.

Day 35

The dex-Velcade was moved up one day due to some administrative problems in the chemo clinic. I had asked my oncologist to add the urine spot check to this week's tests and he agreed because this reading was the only indicator that something was wrong. The test results were finally released to me and the protein is down to 9.9 from 200!! Creatinine 98 and the protein / creatinine ratio down from over 2.0 to 0.1! Since feeling good and being happy is the main goal, I am close to achieving it. A big concern about damaging the kidneys and /or damaging the heart (amyloidosis) are alleviated.

Can anybody tell me how many weeks of induction therapy is the 'norm', even IF I get a complete remission in the first 2 X 4-week cycles, of course?

I am only at the end of my first week of this second cycle and 3 more weeks to go yet! But I am extrapolating the [1 - 1 / x^2] or the [1 - 1 / e^x] functions and wishfully predicting an early complete remission, only based on this trend. I am not even sure if a complete remission can be confirmed without a biopsy (ouch!!), which I won't want till the complete remission is very likely and just needs a confirmation.

This being the dex-Velcade day, I cut back on the coffee sugar, got my 1+ mile fast paced walk and had a big breakfast before the dex. I was feeling quite restless and very irritable while driving the 25 mile / 30 minute dash to the chemo clinic for the Velcade shot. Another Velcade shot, another chemo nurse and another request to get a subQ shot with the air bubble at the top of the syringe. Other than that, all went well.

I took a full 50 mg of Benadryl before bedtime and had a good night's sleep. A great week!

K_Shash

K_Shash
Name: K_Shash
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 2014
Age at diagnosis: 67

Re: K_Shash's RVD induction therapy experience

by Cmouli on Mon Jan 26, 2015 3:59 am

Hi Mr K_shash,

I am once again glad to see your numbers.

For my dad who went into remission temporarily on January 7th, has improved, hemoglobin of 12.6 from 10.5, but the WBC numbers are still borderline and yet to improve.

Our doctors insisted on the bone marrow biopsy (which my dad was not interested in). The kappa numbers in the free light chain assay were all low. Despite that, we went ahead with the doctors' insistence of biopsy. Also, I wanted to be sure my dad's treatment was working. So, yes, we did do the biopsy and his plasma was down to 3%.

We have stopped the chemo since a month.

Good luck,
Anu

Cmouli
Name: Cmouli
Who do you know with myeloma?: My father
When were you/they diagnosed?: Nov 4, 2014
Age at diagnosis: 78

Re: K_Shash's RVD induction therapy experience

by K_Shash on Tue Jan 27, 2015 5:54 pm

Hello Anu,

I hope your Dad continues to improve and regain his strength by the day. I am sure his main­tenance therapy should be far easier to tolerate and still keep the myeloma in complete remission. Good luck.

Update on my own treatment:

Week 6:

It has been a fairly uneventful week, partially due to my understanding and adapting to the 2-day immediate reaction to the dex + Velcade. Also, I have successfully avoided most of the infections, particularly my grandsons', who were still coughing and had runny noses. I sure hope they will be over all those coughs and colds by Friday.

The first day of this dex-Velcade week, I

  • Did my early morning stretches and took my 20-minute, fast-paced walk early in the morning (dex to follow with breakfast).
  • Took my 20 mg dex with a heavy brunch.
  • Made sure that the new nurse used the air bubble in my Velcade shot
  • Took a Benadryl that night
  • Did not do any exercise or fast-paced walking for the rest of the day or the next day.
Next Day: Did my stretches and mild push-ups and squats, late in the evening.

Resumed my 1- to 2-mile, fast-paced walk from the third day.

Played a round of golf but rode a cart, on the 6th day after dex and Velcade.

I need only 5 hours sleep at night IF I do not have much exercise earlier in the day. Revlimid makes me quite drowsy. Therefore, I have to delay taking Revlimid (with acyclovir) if I cannot manage at least a 20-minute, fast-paced walk during the day. No fun to be awake at 2:00 a.m. and wandering around the house and trying to find something to do.

The blood test on the 6th day showed no change in the RBC, WBC and hemoglobin levels. I seem to have been able to tolerate this treatment and its side effects quite well.

Of course, I am anxious to see what the complete blood and urine tests will show on February 9.

K_Shash
Name: K_Shash
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 2014
Age at diagnosis: 67

Re: K_Shash's RVD induction therapy experience

by K_Shash on Thu Feb 05, 2015 9:03 am

Week 7:

This has been a difficult week. I felt more fatigued than ever, and it lasted well into the fifth day after the Velcade shot. Finally, on the 6th and 7th day of the week, I felt I can manage most of my physical activities. I did push myself to take walks and also to do my routine stretches during the early part of this week.

NEW side effect:

I noticed, only accidentally, a lot of hives on my forearms on the 3rd day after the dex-Velcade (Saturday). Later that evening, I found the red rash / hives all over my upper body, too. I have had no itch or any burning feeling. I read up a lot about it here on the Myeloma Beacon and found that this Revlimid rash is a fairly common side effect. The common remedy of Benadryl seemed to help and I continued to take the Revlimid with Benadryl throughout the weekend.

My oncologist, however, advised me on Monday morning that, as I was near the end of the 3-week 'on' second cycle of the Revlimid, it would be best to stop taking the Revlimid for the remaining 2 days and he would re-evaluate the Revlimid treatment next week. Already, the Benadryl seemed to have helped, in that the rash hasn't spread and the original hives on the forearm have lost the redness, dried up, and almost disappeared. This could have been partially due to skipping the Revlimid Monday night, and also due to the Benadryl I took every night since discovering this 'rash'.

Throughout all the seven weeks of this treatment, I have not felt any nausea, had only a slight case of constipation, and no lack of appetite. I have maintained my weight throughout, too. Benadryl has sure helped me on the day of and on the day after the dex/Velcade.

I am eagerly awaiting the end of the 8th week when the blood tests would reveal if I have achieved a complete remission, based on the kappa and lambda readings.

K_Shash
Name: K_Shash
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 2014
Age at diagnosis: 67

Re: K_Shash's RVD induction therapy experience

by K_Shash on Thu Feb 12, 2015 11:53 am

Week 8:

This was another uneventful week, more like the week 6 of this chemo. That may be partially due to the fact that it was an "Off" week for the Revlimid, and I had to skip the Revlimid for the last two days of the week 7.

The routine remained the same, otherwise; minimal physical activities on Wednesday and Thursday (I take the dex on Wednesday morning and get the Velcade shot that afternoon). Both grandsons were perfectly healthy and had a great time with them on Friday and Saturday. Un­for­tunately, it rained a lot in the Bay area on Friday and Saturday, and we had to remain in­doors. I had no problem assembling a piece of furniture on Saturday and Sunday, at a steady pace.

Eagerly waiting for the kappa lambda results of the extensive blood testing done on Monday. All blood panel results, like the RBC, WBC hemoglobin, etc. are holding steady. However, the kappa and lambda FLCs were not available as of late last night.

K_Shash

P.S.: Late yesterday afternoon, on the first day of Week 9, finally the lab results from Monday's blood test came back to my oncology team and my kappa free light chains dropped from 127 from the end of the first cycle to 48.2. Though I was hoping for a 90% drop, my oncologist told me that this was 'Very Good to Excellent" and the 62% drop was nothing to be discouraged about. K/L ratio is down to 4.55 and all other parameters are fine, too. The urine protein and the protein creatinine ratio was already in the 'normal' range and I believe I do not have to worry about any kidney damage, as the kidney function has been normal, all along.

I am hoping for a SCR / CR level soon. The oncologist indicated that I would need to complete at least this and the 4th Cycle and, of course, depending upon the lab results, go on the maintenance treatment. I cannot wait to get back to my full activity weekly schedule.

K_Shash
Name: K_Shash
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 2014
Age at diagnosis: 67

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