Physical Therapy

Monday was to have been Day 11 of the second cycle of Velcade. Pete's platelets were only at 44 so the last dose was skipped. He finished up his steroids that day as well.

Wednesday we went for a physical therapy evaluation. It went very well. I wasn't in the room with him, but he was gone a little more than an hour and was very upbeat and excited when he returned.

According to him, he has much better range of motion than they expected and the therapist was very impressed with his muscles overall and his attitude of moving and doing rather than sitting around and wasting away like so many of her patients.

He is set to begin next week with 1 hour a day on Monday, Wednesday, and Friday. She gave him some exercises to do at home and said that she expects a complete recovery with full mobility in a month's time.

It will be nice if he has two arms again!

Velcade is working

Pete will finish his second cycle of Velcade and the other drugs on Monday. He's started on another round of Dexamethasone today. (That means he's going to be feeling energetic, pain-free, and hungry for the next four days.)

We saw our local oncologist yesterday and he confirmed that the IGG level is in fact decreasing (Was 22-2400, down to 1550). His platelets are low (86) which is normal with Velcade. Before his next cycle we will visit the doctor and he'll review labs and decide whether he should receive platelets and if there are any other adjustments to the next cycle of Velcade.

Next doctor visit will be 2/5 and next cycle will begin 2/8. He has a rest for now.

He'll be starting physical therapy for his torn rotator cuff.

The Plan

We had a visit with our new Internal Medicine doctor last week, made a trip to VCU in Richmond and met with our transplant doctor and now understand better what we are doing.

We were told in 2006 when Pete had his bone marrow transplant that a tandem transplant is what was recommended for the best result. Unfortunately, Medicare considers that to be experimental surgery still and would only approve a single transplant. The tandem transplant is back to back and kills off the most cancer cells and give you the longest possible survival rate.

It would be no benefit now to do another single transplant. He wouldn't get any more extended time out of it than he did the first one. Each time you do one, you lesson the chances of getting enough bone marrow the next time and also the strong chemo and whole process are very hard on your body. The only way that he would be considered for another transplant would be to do a tandem transplant.

It may be in a year or two or a little more, Medicare will approve the tandem. Of course as time goes on there's no guarantee that Pete will even be a good candidate for this so we can't put our eggs in that basket.

The Velcade is the best known treatment for this moment in time. Velcade can be used with a number of different drugs for lots of different combinations. That is what is recommended by the transplant team for maintenance for the remainder of the year most likely.

If it gets to a point that this therapy isn't working to keep his proteins down and kidneys in good form, then other therapies can be reviewed. There are a lot of combinations out there, but they are all just for maintenance and not intended for long-term use.

So, bottom line right now is that every two weeks Pete will take steroids. He needs to slowly build his muscles back up and then maintain his muscles with the steroids. He will receive the Velcade on Day 1, 4, 8, & 11 followed by a 10-day off period. This will continue over and over.

We are not making any long-range plans at this point. We are trying to use this time to take care of business and to just make ends meet and try to have a comfortable quality of life and enjoy what we have here and now.

The good news is that research can come up with better alternatives at any time. We'll just hope that it comes sooner rather than later.

Frustration

Pete began Velcade treatment while he was in the hospital. Two years ago when he received Velcade it was relatively new. Now it is a standard form of treatment and has been found to be a good base drug in the chemo class to mix with other drugs for improved treatment of Multiple Myeloma. Pete received it with Dexamethasone (steroid), which he's had in the past, and Doxil, which he received for the first time.

The Velcade is given in a cycle of Day 1, Day 4, Day 8, and Day 11. The Dex was given for the first 4 days and the Doxil was given on Day 4 only. Day 8 & 11 he received the Velcade as an outpatient at the clinic.

We had an appointment with our new oncologist after the Velcade cycle. We did see him while Pete was in the hospital and at the clinic. Since our long-time oncologist has retired, we've been trying to adjust to a new doctor. It has been trying.

Our former oncologist taught us early on that attitude will make or break cancer treatment. He also believed and understood quality of life and that every patient has the right and option to refuse treatment at some time and choose to do nothing and die naturally. He was also very good at letting us know options and what he was recommending and why.

Our new doctor is very quiet and we don't know where we stand or what is ahead. This is very frustrating and has made it more scary for both of us. This is the first time that I have visibly seen Pete scared.

We made specific attempts to explain our philosophy to the new doctor and tried to ask direct questions. We've always known why things were happening and had a plan for what we're doing now, what we're going to do next, and what we do if this or that doesn't work. We were unable to get any information on any plan from the doctor. We are unsure at this point if he doesn't know, doesn't have a plan, doesn't have experience with Myeloma, or just doesn't like to give out too many details. We left with Pete extremely frustrated.

It was mentioned the first time that we met this doctor that there was some surprise that we weren't cared for by VCU in Richmond since the transplant was done there. That wouldn't make good sense to have a care provider 3 hours away from your home.

We were recommended to make an appointment with Richmond and see what they want to do. We don't know if Pete would be a good candidate for a second transplant. We don't know if Medicare would cover a second transplant. We don't know his chances of survival (it's very hard on your body) and if it would even be worth it. We also don't know what other treatment options might be viable, but do know from our online and and newsletter reading that there are plenty of options out there.

We have an appointment later this week to travel to Richmond. It's going to be difficult to travel with the expense involved, but we must do it. We understand that VCU has a new doctor on staff in the Bone Marrow Transplant (BMT) unit that specializes in Multiple Myeloma. Our doctor wasn't available and while it sounds promising to see this new doctor, we requested to meet with the previous doctor just to have someone that we know that can shed some light on what we can't seem to get out of our local doctor.

We have also made an appointment with our Internal Medicine doctor to ask him why Pete's legs were so weak before ever receiving the steroids and to ask for a referral to the orthopedic doctor that visited him in the hospital for his torn rotator cuff. We have no idea what Pete should or shouldn't be doing and have received no instructions. There seem to be too many doctors involved and everyone wants to point out that something is not their job and recommend we see a different doctor. This is very frustrating.

So, this week will be a week of doctor visits. Pete is tentatively scheduled to start another cycle of Velcade on Friday. He has taken oral steroids for the past 4 days and after two days of them he started feeling very energetic and actually moved beyond his normal living room-bedroom-bathroom area of confinement. This was also a good mental "up" for him. I'm hoping that he won't crash after he's off them now and sleep for the rest of the week.

He is to start today to take Bactrim, an antibiotic that he received after transplant. It is given on Monday and Tuesday only each week. We have no idea why he is taking this and didn't seem to get an answer from the doctor. Hopefully the doctor in Richmond can explain. He's also still taking a drug to reduce uric acid. We understood everything was fine with his kidneys so don't understand this either.

We have yet to get a lab printout and I've been trying to not push the issue too much, but I believe I'm going to have to start demanding one and standing my ground. I'm not sure what has changed that these aren't handed out upon first request as in the past.

I will update later in the week when we know something more. We need a plan.

Surprising Gift

We've been very blessed with recoveries over and over through this Multiple Myeloma ordeal. It's been over 5 years since the original diagnosis and many patients don't survive that long or undergo as many different treatments. We've had a good attitude and lots of people praying for us.

We have been having an exceptionally rough time lately because of concerns over money and without the clear picture we've had of a charted course of action. Pete is also much worse than he's been in the past and it's weighing heavily on his mind.

We received a very mysterious envelope at the post office. It had been addressed in a typewriter and you could tell it was probably and old typewriter since the letters pressed through the envelope in places and were not even like newer typewriters. I was almost afraid to open it. I handed it to Peter. There was no return address on it and only a local postmark. He thought it may have been a chain letter. The envelope was marked "Do Not Bend" and you could feel something hard through it as if a card or photo.

We opened it to find a letter from the Disciple's Ministries. It stated that they have heard of our struggle. There was a bible passage and the letter stated that they witness through service and wish to remain anonymous as they serve the lord. "While we must remain anonymous as we serve our Lord,; there are those of the Body who shall keep us informed as we prayerfully ask Him for your improved health."

With the letter was a Kroger gift card with Peter's name typewritten on the gift card holder. We do not know the amount of the gift card, but even $1 would be fine right now.

If whomever is reading this that was responsible for informing or acts with Disciple's Ministries, please accept our thanks. We are very moved by your generosity and appreciative of your prayers.

Thank You!