Hi! Kathy,
How are you doing? I was not getting auto update from this site, I guess I had to check off settings? Are you walking, eating, drinking? Hope all is well.
Ed

Hi Ed,

Yes, I'm doing it all. I had to make a special visit to the doc last Tuesday during my week off from Chemo. It appears that I feel my worst the first 4 days during my week off. My blood pressure was extremely low and was causing the extreme weakness, and dizziness. I got 2 hours of fluids and more potassium. That worked and I feel better. It's off to cycle 3 on Tuesday.

I'm now in cycle 3 and they lowered my Velcade dose due to the ringing in the ears and the extreme neuropathy in both hands and feet. I'm still responding to treatment and after round 4, they will harvest my stem cells and perhaps another round of Chemo combo. I had to go to the office yesterday and a few people were hacking and sneezing, voice lost, etc... I stayed away and did what I had to do to leave. Unfortunately, I still think I got something some them. So, in addition to Chemo, I got Thamflu and antibiotics. I'm just going to relax this weekend.

Hi! Kathy,
Glad to hear you are out and about. Were you at the doctor's office or working? Do you wear a mask when out around people? I had valcade with other chemos in combination. I had some neurothapy in my feet. When going for long walks (2-6 miles) it would bother me, then I would get big chunks of skin that would peel off my feet. My oncologist gave me a subscription for Neurotin and it has taken care of it. Once in a great while my feet will bother me a little. Hope you feel better.
Ed : )

Hi Ed,

I try to go the office several times a week. I was there twice this week and then at the doc on Friday. My treatment days Tues & Fri take the majority of that time. I try to get my appt at 8am, but still manage not to leave before 1. Then I'm home just checking e-mail, etc... So, I work when I can. I know that as time progress, these treatments will wreak havoc on my body. I have the better insurance, but at least my STD time is 6 months, so I should be good. I've learned that when I feel bad, not to push myself, but rest. How are you doing? Are you working now? Are you having any other side effects? How many treatments did you do before you transplant and how long did it take for you to recover or get back to some type of norm? I don't wear a mask when I'm out. When I'm in the office, I'm in my own little space to try to move quickly and get out. Other than that, I try to avoid crowds.

Hi! Kathy,
Its good that you are able to keep busy, it keeps your mind and body sharp : ) March 6th will be my 100 day mark since transplant. I think I am doing well, Fri I went for blood work, full body x-ray, and turned in a 24-hour urine sample. Next Fri I will have to go for a bone marrow test. When they get the results I should hear more. I picked up a sore throat yesterday, I got a little wet being out in the snow. I started working some on Feb 12th, part time the next week, and this past week I worked 2 full days and expect to work a full week starting monday. I have not been cleared for work, but I'd rather die of cancer than starvation : ) I will cut back if I start to have problems. I would say my biggest change has been loss of strength since transplant. I used to go to the Judo club two nights a week and work full days when busy. I believe there will be changes in my life, but change is good right? God knows and sees everything about each one of us, he knows how many hairs I have been growing back on my head (peach fuss at the moment) and the number of tears we have shed, it is a comfort to know He is there in this journey.
I have had some back, neck, and knee pain. I am hoping that when I resume Zometa treatments it will help, maybe, maybe not.
Before transplant I went through 4 cycles (3 months) of chemo, after a bone marrow test I was found to be with 1-3% MM in my marrow and considered to be in remission. I would say within one months time I was feeling great, I was eating good, putting on weight. When I told my oncologist about the weight, he said thats good, you are going to need it soon, he was right.
I was very careful in wearing my mask when my immune system went down, when I got home I would wear it when people came to visit, when I started to work also. I am not wearing it everywhere now, but have not been going into public places with crowds yet.
I am glad to hear you are doing as well as you can. Looking forward to hearing more.
Ed

How long after your 4th cycle ended did you have your transplant? If given the option, would you have chosen to go another round before the transplant? The doc did inform me that it takes about a total of 10 days to harvest the stem cells, which they will do next month. I'm just trying to get a better timeline so that I can have as much in order as possible when that time comes. I guess it's good that I can work from home when needed. There is no way that I could sit in that office 40 hours a week going through this. I get Chemo twice a week and that's the majority of the day. Keep me updated on your progress. It's great to hear from you and to know a little more about how you are handling the process.

Hi! Kathy,
Sorry it has taken so long to get back to you. I have been trying to work, and that sore throat I got turned into an "upper respiratory infection" Is that another word for cold? They gave me a prescription for antibiotics.
I had to do a search for dates, I did not keep up with a journal that was started early on with my diagnoisis. So here goes:
Approx Aug 12 was end of my 4th cycle. There was a lapse of time in between. I think the SCT Hospital originally wanted to do transplant sooner, but had to fit us into scheduling.
Oct 22 I recieved Cytoxin (heavy dose)
Oct 24 I started Neupogen shots for 9 days (did'nt have to do 10th because of counts). Not everyone gets bad bone pain from this event, I have never been in such pain as this, (back & hips) it happened about middle to 2/3 way through 9 days and lasted about 24 hours? You might want to have some heavy duty medicine available just in case.
Nov 2 Had stem cells harvested, all in one day, they said there were almost 25 million. (procedure was fairly easy)
Nov 26 Admitted to hospital, port installed in my shoulder, and Melphalan (heavy dose) given. If you have same chemo, don't splurge on the ice in your mouth during procedure, I did'nt get any mouth sores.
Nov 26 transplant was given ( It was the easiest part of transplant)
One Week Later - Day of Reckoning, it takes a week for the Melphalan to sink into your bones and start killing your immune system. It was almost like clockwork and I started with diarhea, nausea, and occasional vomitting.
I was glad to be done with intial chemo and did'nt want more, I will say my oncologist was right when he said " You havent had real chemo yet" The Cytoxin and Melphalin were heavy duty stuff. I am not trying to scare you, everyone is effected differently. I found this article very informative www.loripuente.com/2011/02/neupogen-shots-bone-pain/ But keep in mind not all hospitals do things the same and people react differently also. Hope You are doing Well, You are in our prayers : )
ED

Do you find that the myeloma interferes with kansetsu-waza much?

Hi! Tom,
I had to look that one up in my USJA handbook, I am a Rokyu and havent done much with joint locks, maybe a little with arm bars. In competition you have to be a brown belt or above to use them I believe. Before diagnoisis I trained for 3-1/2 years. I have not done more than warm-ups on my own since diagnoisis. I am very fortunate to not have more damage. I do miss mat work and kneeing randori. Do you do Judo?
Ed : )
PS I am more worried with being Uke in Nage Waza

Hi Ed,

Sorry it took so long to respond. Everything I tried to respond, the computer would get hung it and erase my respone. Thanks for providing the additional information. I'm doing well and have already gotten my dates to begin the Pre-Transplant testing and conference. I will keep you posted.

Thats great news Kathy,
Each step along the way would be a sigh of relief, knowing I was a little closer to being done with transplant. Try to eat, drink, and get stronger for next step. Are you doing any walking?
Ed : )

Hi Ed,

I'm still very active and working full time. Although my job requires a lot of driving, I also do a lot of walking. What maintenance meds are/where you on after the transplant? I'm just curious that if this goes into remission at the end of this cycle, doing a transplant and then having to take meds seem a bit redundant.

Just a thought.

Kathy

Hi! Kathy,
I had a bone marrow test on Fri. and have an appointment in a couple of weeks to find out results of all tests. I am not very fond of the procedure. I did work yesterday, so am feeling OK after the fact. Both my oncologist want me to go on Revlimid for maintenance. I have found that many people are on some type of maintenance, due to the fact that my MM is aggresive I would like to do a low dose. I would really hate to do another transplant. But I don't know what my insurance will pay on Revlimid, so that might be a diciding factor. Hope you have a good weekend : )
ED

Hi Ed,
Glad to see that you are able to work some. I read that most are on some type of maintenance and that most have at least 2 transplant. I'm praying that this goes into remission and that i won't need the transplant. I won't know for at least another month. I'll keep you poste and you do the same.

Kathy