Winnipesaukee for a week and then back to the Treatments

We took advantage of the third week of the first cycle, the week when you have no treatments and the toxins have a chance to wash out of your system, to go to New Hampshire.  It was very nice and relaxing, but somewhat frustrating in that there were all sorts of tasks to be done that I normally would do, but which I cannot do in my condition.  Initially it was chilly, but then it got good and hot.  Having the lake right there was a blessing.  Not that I could dive in, but I could walk down the ladder and experience getting used to the bracing water slowly.  Swimming turns out to be good, but I am still reluctant to do any sudden motions, for fear of breaking yet another bone someplace.


Five guys from a men’s group I am part of came up for the weekend, and attacked Barbie’s list of man-chores.  They worked like demons, and got everything on the list plus more done.  A good time was had by all.  Barbie fled to Vermont to do Tyler babysitting.  Had she been here, she would have been compulsively cleaning after every move the men made.  We batched the job, and cleaned up at the end.  Here are a few pictures of the group, just to show this blog can feature pictures as well:

Then it was back to Stow to resume “normal” life and treatments.  But first there was some drama about the 3rd drug I am to receive in this new cycle of treatments.  The new drug is Revlimid, which is related to Thalidomide, the drug that led to deformed babies in the 60’s.  I had to sign a statement saying I would not engage in unprotected sex with a fertile female, not share my pills with anybody, not let a fertile female even touch the pills.  Then came the issue of Cost.  The retail price for 14 days of pills through a mail order pharmacy (RightSourceRX) is $5453.97.  Under my Humana Drug Insurance plan, the co-pay for this prescription is $2404.48.  Since this is a drug I will get from here on in, and maybe for maintenance as well, this was quite a shock.  So the Nurse Practitioner put me in charge with a lady at Celgene, the manufacturer of the drug.  Apparently there is a foundation that can help people who cannot afford to pay for the drug with their co-pay amounts.  If this were to depend upon last year’s tax return, we would never qualify.  But this year I have not been working and we just decided to take Social Security.  That plus the fact that Barbie does not teach during the summer enabled us to get below the magical level of $75K of income to qualify.  For this round, our co-pay is $30.  I suspect it will go up for subsequent rounds, but never be close to the $2404.48 mark.  Our health care payment systems make so much sense!

Upon return I had the following questions for Katie Conway & Dr Levine.  The questions in black are literally what I took with me to the hospital.  The answers are in red.
1. What are my blood readings?  Can I get them on a regular basis, so I have some knowledge of how I am reacting to the treatments?  We now know about the International Staging System, which is based on blood characteristics.  What are my serum beta-2 microglobulin and serum albumin levels?
KC: Normally they don’t share the blood results, as the raw numbers can alarm some people, and they want to deliver the information in person.  But if we are interested in the raw numbers, they would be happy to share them.  The batch of tests they requested today are ones that take a few days to process, so she could phone or email the results when they come in.  We traded email addresses.  The INR was one test that comes in quickly, and I am at 2.4, so Dr Levine is happy, and we can proceed with the Revlimid.
2. Where do we stand with appealing to the drug company for a reduction in the cost of Revlimid?  Do you have an English version of the Revlimid pamphlet?  You gave us a Spanish version last time.  Can we get a medical letter of necessity to use with our drug insurance company?
KC: See above with the Revlimid cost appeal.  I completely forgot to mention the Spanish pamphlet.  My GP later in the day volunteered any letter of necessity should the insurance company require one.
3. What will the dosage of revlimid be?  [I assume they will tell me that.  I suspect I don’t need to ask.]
KC: She had already phoned in the prescription to RightSourceRX.  25MG capsules for 14 days.  The shipment was coming by UPS.  I left home around 9:30 on Tuesday, and they had not delivered by that time.  They did arrive Wednesday afternoon, and I started the 14 days Wednesday night.  They suggest taking them at night, as they make you tired, and it may counteract the wakefulness that comes from the steroid.
4. When will I next get a dose of Reclast?
Dr Levine: Reclast they only give once a year.  There is a different form of Zoledronic acid that they give on a monthly basis to Multiple Myeloma patients, I think the name is Zometa.  They gave that to me that Tuesday.  [So my list of appointments shows who I am going to see, not what they are going to give me for treatment.]
5. I have continuing pain in my ribs.  I don’t feel as if I am breaking anything new, but there is ongoing discomfort.  Could that be because there was damage to the ribs and they are never allowed to be completely at rest?  Did the 5/20 MRI show any damage to the ribs?  If not, why should I be experiencing rib pain?
KC: The MRI analysis says nothing about ribs.  The MRI was focusing on the spine, and normally they don’t pay much attention to other things.  At any rate, if there is rib damage, they just have to get better on their own.  Which they normally do.
6. I would like to resume some physical activity.  I have done some swimming, but initially I felt that I had to be careful to avoid sudden moves, which might cause additional damage.  Would joining a local pool be a good idea?  Would doing sessions on a stationary bike be OK?  How soon should I try to increase physical activity?
Actually by this time I had twice done the stationary bike in the barn, armed with a cell phone at Barbie’s insistence, in case I did any harm to myself.  It felt good to actually get my heart beat up a bit and to breathe hard.  KC said be careful, but do whatever works for you.
7. How long should I expect the “wired” effect of the steroids to last?  Even during my week off I was experiencing wakefulness during the night that I do not normally have.  Yes, you gave me a prescription to deal with that, but I am loathe to take too many pills.
KC: She reviewed my list of prescriptions, as she had prescribed a couple of pills for nausea and one for nausea and insomnia.  She suggested that I take Omeprazole on a daily basis to reduce stomach acid.  She pointed out that Lorazepam should address the insomnia, and I should take that as needed.  This gets me up to 10 pills a day, at 3 different times per day.  I am like clockwork with the morning pills.  I am less reliable with the other pills at 2PM & 10PM.  I often get out of bed remembering that I forgot to take the bed-time pills, only to find the 2PM pill is still there.
8. Dr Levine was skeptical about my Coumadin schedule of 2.5 every day except 3.75 for Mon, Wed, & Fri because the dosage was not even.  If I should have a different dose that is even every day, then maybe I should have different size pills.  My pills are 2.5 and I take 1 ½ on the days I take 3.75.  The total for the week is 21.25.  Would 3 milligram pills be better?
KC: Manage it as best you can.  No apparent need for a prescription change.  I have my own testing device.  Use that to adjust the dosage appropriately, getting the INR into the 2-3 range.
9. Can we communicate with you via email?  Frequently questions occur to us when it would be inappropriate to call the phone #’s available.  We would prefer email.  Possible?
We exchanged emails.
10. Bridget said there is a process whereby I can access all my medical records at BIDMC.  How do we start up that process?
KC: BIDMC has that process, but the Oncology department does not participate in it.  There are some readings that can be quite alarming to patients, and they would rather deliver those messages personally.

Overall the treatment went well.  But as I was sitting there receiving my Zometa (or whatever it is called), I got a cell phone call from Susan Avery.  She was on a return flight from Tanzania with her whole family, and I had arranged to pick her up at the airport.  I had completely forgotten!!!  So it was a race to my car and off to Logan Airport as soon as the drip finished.  I got there and hit redial on my cell phone.  It shows you how much time has elapsed since the prior call: 56 minutes.  So I made them wait an extra hour at the airport, after they had been travelling for 14 hours already.  But we had a great talk about Tanzania and the safari they had gone on.  It was a family-oriented trip with 8 of the 17 people on the trip kids, and they had a great time.  But by the time we got to their house, my bladder was just about bursting, as the drip sure puts your kidneys into overdrive.  So I got to see the inside of their very nice Victorian home.

The extra trip to the airport, which hadn’t even made my cell phone calendar, put me behind for an appointment with my general practitioner, Dr Kafina.  He reviewed my records and expressed sympathy.  But he said I looked very good and appeared to be bouncing back nicely.  He searched in the medical records for various tests and procedures that were done to see if there were any signs that should have been interpreted differently.  I am convinced I had a bone marrow biopsy as a result of a test that revealed a Monoclonal Gammopathy of Unknown Significance (MGUS).  Dr Kafina could not find that in my records.  He asked the administrator/receptionist to follow up on that.  I asked if people with MGUS shouldn’t be monitored more closely.  I did have a session with a hematologist (Dr Humberto Rossi) in 2009, so it is unclear how much more should have been done.  He gets lots of patients with MGUS who live on into their 80’s before anything happens, and usually it is something unrelated that does them in.

That evening I had a very nice dinner with friends down the street.  I have been absolutely brazen about inviting myself out to dinner with friends during this time home.  The Fischers on Tuesday night, Firooz last night, and the Brownfield/Lents tonight.  In return the Brownfield/Lents are coming up to New Hampshire this weekend, but I am hitching a ride with them, so it is not totally without strings.

In general, I am feeling much better.  It feels as if the bones have stopped breaking and are on the mend.  The worst part about breaking new bones was the knowledge that the 6-8 week time clock for bone healing was being reset to 0.  Now maybe all the calcium, Reclast, and Zometa is having the desired effect of building bone strength back up.  Katie Conway did call with a report on my blood results.  The key measure they are using to gauge the progress against the disease is the serum free lambda (whatever that is).  The target is less than 26.  My initial reading was 1329.  My latest reading is 317, which means the treatment has cut the reading my more than a factor of 4.  She said this was a great first response, and she wanted me to know it as soon as it became available.  Hooray!