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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: K_Shash's RVD induction therapy experience

by K_Shash on Sun Dec 28, 2014 1:54 pm

Hello everyone,

I really appreciate this forum and all the advice and information I could get here, from Tracy J, Multibilly, MikeB and Dan's discussion thread and Dr. Santiago's experience; to name just a few. Getting some sleep, minimizing the Velcade rash, and just the insight into the various side effects has been more helpful for coping with this ordeal than any printed matter online or what they gave me in the oncology clinic. My treatment and its side effects, so far, pale in comparison with the experience of so many of you that have already undergone ASCT.

Day 11

A typical mid-week (chemo week) day?

I remained drowsy till past noon, thanks to the late morning dose of Benadryl. That half a dose worked well, but I had to force myself to get up and take the daily dose of morning medication.

Our little grandson came over for a few hours and 'made my day'. A 30 minute nap around 3:00 p.m. and I was feeling great. An omelet for breakfast, a full helping of minestrone with toast for lunch (just right for the weak taste buds and the stomach) left no appetite for dinner. The family went to a large gathering of relatives and I stayed home to avoid the crowd. I managed a pretty brisk 1+ mile walk in the evening and had some cheese, wine, and snacks just before the night time Revlimid, acyclovir and antacid, etc.

I did manage a good night's rest from around 8:30 p.m. till almost 6:30 a.m., with bathroom wake up calls every two hours for passing the urine. I am drinking at least an additional liter of water every day to help flush the kidneys. My kidney function is still good, but the high IgG in the urine shows all my excess protein is leaking through the kidneys. I hope this helps the kidneys. I am as concerned about having to live on dialysis as I am about this myeloma.

This is the morning of Day 12 and all indications are I am feeling much more 'normal'. Trying to forget that the whole cycle will start Wednesday (14th) night.

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 James S on Sun Dec 28, 2014 9:23 pm

To K_Shash - The injection site has always been red and itchy with me, and it will last about a week (till next shot). ;) When they inject slower and hold it for a 5 count, it seems to be better. The amount of Velcade depends on your weight, though they reduced mine to 80% due to neuropathy. My doctor prescribed Ambien for me to take on shot day. Between 8 mg dex, Velcade shot, Zometa monthly, and the start of the 21 day cycle of Revlimid, I was a little wired, to say the least! Am also taking gabapentin for neuropathy and acyclovir for immune system!

Am returning to Little Rock in February and expect to be taken off all chemo as my numbers have been normal for a year now. Have been on current meds for 3 years after my stem cell transplant. Hang in there

James S
Name: James Szalay
Who do you know with myeloma?: Self
When were you/they diagnosed?: Nov. 2010
Age at diagnosis: 68

Re: K_Shash's RVD induction therapy experience

by Ellen Harris on Sun Dec 28, 2014 9:59 pm

Velcade reaction sounds like what i had. I used some aloe vera gel on the site which seemed to help. On one occasion the site became black and blue. That can happen as well.

Ellen Harris

Re: K_Shash's RVD induction therapy experience

by tomhardy on Mon Dec 29, 2014 2:11 pm

Hi,

I have been in "remission" since first being diagnosed in January of 2010. I was diagnosed with stage III multiple myeloma, I think. I underwent surgery immediately to stabilize my fifth cervical vertebra, which had been badly damaged by the multiple myeloma. That was very successful, thank goodness, and I am indebted to Dr. Andrew Youkilis for life! This was followed by radiation therapy to the major lesions in my legs and back. After that, I received dexamethasone, Revlimid, and a bone growth injections.

I have not had any maintenance therapy and, knock on wood, have had relatively few problems since then. I get leg and neck cramps occasionally and am more susceptible to colds and viruses. Back pain has limited my activity. I plan on getting into a swimming routine to maintain physical vigor, but I hate the idea of swimming during the winter.

My blood is tested by my oncologist every three months and so far has not shown any recurrence of significant disease.

I wish you the very best. If I can be of any further assistance, please let me know.

Good Luck,

Tom

tomhardy
Name: Tom Hardy
Who do you know with myeloma?: self
When were you/they diagnosed?: Jan. 2010
Age at diagnosis: 63

Re: K_Shash's RVD induction therapy experience

by K_Shash on Mon Dec 29, 2014 5:44 pm

Thank you Tom.

I also came across a post from another contributor, Dan in Phoenix, related to Medicare not covering stem cell storage. Dan was was diagnosed in 1987 with amyloidosis and was treated with the then latest chemo drugs. He writes about not having needed ASCT, in spite of having harvested and frozen the stem cells for 25 years. Unfortunately. he has relapsed recently (2013?) and was undergoing chemo with the latest drugs.

Wish you all the best, Dan. I hope my treatment is equally successful. It is too early to tell, though, since I just finished my 12th Revlimid dose last night and won't know the success of my treatment till about mid-February.

Daily Log

This morning of the Day 13 of my treatment I had to go for my blood test (CBC and WBC) and do some chores. My dex and Velcade are scheduled for Wednesday morning and afternoon, respectively. I would expect to have my best energy level on Monday and Tuesday, based on the last week's experience. Planning a little golf with my son tomorrow, and this time I plan to use a golf cart.

Day 12

It was a pretty uneventful day. The nurse used the "air bubble" in the syringe to minimize any contact of Velcade to the outer skin layer, and she also gave this last shot slowly. The combined effect can be seen by comparing the older "pink spot", which is still fading, and this one, which is already fading, and never burned or itched like the first one.

I had a slight irritation of my nose and throat but all seemed to have cleared by early this morning (of the 13th day). However, I seem to have developed a strange taste in my mouth at night. I wasn't too hungry and everything tasted bland (still the same in the morning of the 13th day). I am hoping that this is not the beginning of the nausea.

By the way, I was in such a hurry to get my introductory post that I did not carefully choose the Subject line: ".. Seeking Advice / Insights", would have been more appropriate.

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 K_Shash on Wed Dec 31, 2014 9:22 am

Day 13

The only new development today was my taste buds are numbed. I needed to add salt and hot sauce to the food. I did not need any extra sweetener in my coffee, though. I had my routine blood test and the results showed a slow but steady drop in the hemoglobin, though just under the "normal low" level for now.

The night was a 'mixed blessing'. I got up around 2:00 a.m., after a good 5-hour sleep. This is all I usually need if I have not exercised during the day. However, the last few days I was sleeping well over 8 hours. I can only guess that the effect of last Wednesday's Velcade and Decadron (dex) are fading and my body is almost back to its normal energy level. Therefore, I expect a pretty 'high point' in my ability for the normal activities today (like I felt on last Tuesday, Day 7 of my chemo). However, I am reminding myself not to test or exceed the new limits of my stamina. My son and I are planning a round of golf, but we'll be riding in a golf cart and this should not be strenuous at all.

Day 14

Nothing eventful, just a normal active day, as if I were not on chemo at all.

My son and I could only play 7 out of the 18 holes of golf due to 40 mph winds here in the Bay Area.

Fortunately, I was covered head to toe and the face mask helped keep the swirling debris out of my lungs. The mask had a layer of dust and debris when I discarded it. No sore throat nor any other symptoms due to the exposure. I might have looked a bit funny on the golf course! But riding in a cart made the game almost effortless.

I still have the mild bitter taste in my mouth. The slight tingling in my fingers seems to have gone away. Either the Velcade / dex reaction is subsiding, or the golf swings and physical activity helped.

Trying not to think of tomorrow, when I'll be taking the weekly dex in the morning and the Velcade shot in the afternoon. But since it would be New Year's Eve, I won't mind being "hyper" till about 12:30 a.m. Keeping the Benadryl handy, just in case.

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 K_Shash on Thu Jan 01, 2015 4:26 pm

Day 15

Woke up early, around 3:30 a.m. Normal amount of sleep for me after a minimal exercise day. I took my weekly 20 mg dex (and the daily aspirin and acyclovir). Ate a couple of slices of toast and had a half a Ramen noodle soup with added mushrooms and bok choy and Chinese broccoli with oyster sauce on the side.

Been only 3 hours, already getting a mild reaction to that dex: Pulse over 105, and pounding feeling in the chest, just while standing near the kitchen sink and washing a few dishes!!

I got the Velcade shot around 2:00 p.m. A new nurse in the chemo lab had to check with last week's nurse to find how the 'air bubble' was to be administered at the end of the Velcade shot. Afterwards, the new nurse told me that she was completely convinced of the merit of this little technique and said she would use that every time, all the Velcade is pushed sub­cu­taneously and minimal rash on the skin!

Surprising how few people in the oncology field know about this little trick that can make the patients' life easy! I (and hopefully many others, at least the patients in my oncology lab) would benefit from this. I cannot thank the Myeloma Beacon and posters like Multibilly and Dan enough for these seemingly 'small things' that can make this chemo phase tolerable.

It was the New Year's Eve and I had no problem staying awake till midnight. I did only light stretches (no push-ups or squats) for my evening exercise and avoided any stressful walks last night. I took my Benadryl around 11:30 p.m. and managed to get a good 6 hours of sleep.

This was the best "Dex, Velcade and Revlimid" Wednesday so far.

Happy New Year!

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 K_Shash on Sun Jan 04, 2015 4:29 pm

Day 16

Day 16 was New Year's Day. It started fairly well, and our little grandson had spent the night with us. I could feel the stress and my heart pounding when I tried to play a chess game on the computer. We had a family get together, Pizza Night, at our son's place (everyone seemed to have recovered from their coughs and colds), and we walked the round trip of about 1.5 miles. I slept well from around 9:00 p.m. till 2:00 a.m. and decided to take a 25 mg Benadryl because I started feeling a little stuffy.

Day 17

I woke up feeling a little drowsy and distended. I couldn't eat much, but by noon I was feeling well enough to go out and do some errands. I began feeling miserable in the afternoon. No better in the evening. No cough, but my nose was all stuffy and my left eye was hurting. And I was still feeling all constipated.

Finally, I had to force myself to drink some noodle soup before taking the nightly Revlimid and acyclovir. That soup seemed to have triggered diarrhea and I had a pretty nasty night. This side effect is similar to what Tracy J had warned me about earlier. I don't know if the eye and runny nose are caused by allergies or if it is some infection I picked up from the grand kids. Ultimately, it was my choice to go visit them, and so far my symptoms are quite different from their coughs.

Day 18

The day was mostly uneventful. My physician wife basically ordered me to avoid exposure to cold weather and also to eat only mild and non-acidic meals. We decided not to attend our older grandson's soccer practice in the cold weather. All this seemed to have helped and we were able to walk at least a 2.5 miles late in the afternoon, thanks to the calm winds.

I had no cough, but my nose was still running and my left eye was still puffed and sore. Fortunately, I had some antibiotic eye drops from a few months ago, and a few drops in the morning and evening has helped a lot.

In retrospect, my eye and sinus problems seem to have been caused by the golf outing of a few days ago in the extreme wind. I canceled the plans for Tuesday's golf. I have been getting similar allergic reactions at this golf course and I cannot take any chances during this chemo.

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 Tue Jan 06, 2015 5:34 pm

Another update:

Day 19:

Again, another uneventful day. Took it easy and watched a bit of football. We took only a mile long, round trip walk.

On the way home from the city, we had a good dinner. However, the cocktail sauce for the fried shrimp seemed to have set off almost an allergic colon reaction, with a lot of bleeding.

Throat and nose are still a problem. Took the Benadryl for the stuffy nose and some cough drops seemed to soothe the throat. Fortunately, I was able to sleep for over 8 hours.

Day 20:

Colon bleeding (but not the common diarrhea side effect of Revlimid), possibly due to severe acidity, dry cough and stuffy nose continue to bother me. All tolerable, but now I wonder if this is partially due to any side effects of the chemo.

My oncologist confirmed that the cytogenetic analysis of my bone marrow results came out 'negative', i.e. no problems to worry about. Apparently, this means I would respond well to the chemo. I hope he explains the significance of this test result in my appointment with him next week.

Still trying to get over the nose, throat and colon problems. I am not sure if the the daily use of Benadryl is also to blame for the colon bleed (no apparent diarrhea, though). Tomorrow would be my "maximum energy level" day of the week, between the Velcade+dex+Revlimid days. Next week is my week off from Revlimid, but the daily dose of Revlimid during the week between the Velcade / dex days has been fairly "free of side effects". I'll post my experience of next week soon after the end of the Revlimid-free week.

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 Jan 08, 2015 7:50 pm

Day 21

The best day of the week. I could do all the routine exercise and had plenty of energy left to do a lot more.

And it was a beautiful day after around 11:00 a.m. I did a lot of chores, car servicing, little grocery shopping, etc. The temperature was above 70 degrees in the afternoon and there was no wind, a perfect day to sip beer on the patio in the sun. I know this wouldn't last in early January. Stomach, nose and the eye are all healing and getting back to normal.

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 and 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 months and I hope I am one of them.

I had to take 2x 25 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.

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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