Velcade -- Word for the Day -- Wednesday, August 25, 2010

Hello, ALL...  The definition we will be discussing today is two fold.  One -- being the caregiver and two -- the side effects of the chemo drug, Velcade.  We have discussed both in the past, but this can be your refresher course without the consequence of a test.  I think you will remember all these answers by personal experience with us -- the Patient (ChemoSabe) and the Caregiver (Pepper).

Life is good, but I am always looking behind.  Our health is good, but I am always looking behind. 

This evening we sat after dinner and talked about -- what else? -- our dogs.  Their current ages.  The ones we have lost and how long they have been gone.  The things each one does that reminds us of many of our past loves.  So many memories.  So many more to come. 

Weekly labs are still over the comfortable mark.  ChemoSabe has been doing very well.  He continues to push himself to the limits.  He has worked in the yard the past three weekends, even though the heat has been heavy.  He asks me to let him do what he wants.  I have never really tried to stop him.  I do check on him a lot and take him some of my bestest tea in the South.  More often water than tea. 

He has been experiencing some massive eyeball pain since this new maintenance began in June.  We laughed and said he was probably having withdrawals from his high dose of Dex.  Then they continued.  We then decided it was the twice a week trips in the heat and the glare of his windshield.  Not that, either, because he was having some on the weekends, too.

We ruled out stress because we both are great stress handlers.  So, we were running out of home remedies.  So, it was with strong suggestion that he discuss it with Infusion.  He made an appointment to see our eye doctor.  He went yesterday.

His prescription he has had for 1-1/2 years is too strong.  Therefore, it is strain from not being able to see.  New lenses on the way.  He showed Fish his med list and he was advised the steroids he has taking for so long has probably put him in the early stages of cataracts. 

Now, he is thinking "Kipper".  Kipper is our ten year old that has had cataracts for years and he is totally blind.  So, he thinks the same.  Not!! 

I was very, very worried.  I was silently thinking tumor behind the eye.  When he got home, after the dye and dilation, he really had a headache.  So much so he went to bed.  But, he wouldn't stay down.  Then we finally turned in.  He was up and down all night battling that thing.  He looks drained today and says he feels like he has a hangover, but he is leaving town in the morning at 2:30.

As I continue to say in my blogs -- "I just don't know how he does it"...

We are both riding on Friday for son's birthday.  We are planning to head out around 0700.  The mornings are cooler and the days are less humid so we all three are ready to get out.  It has been too long for us to ride with him.  We plan to be gone all day and eat a good breakfast and dinner on the road. We are so thankful for everything he does for us, without asking.

I am recuping from torn ligaments in my right hand.  Short story --  I want and sway my arms.  Two weeks ago walking down a hallway with my boss, my right thumb got caught on a door facing and bent backwards.  After taking myself to ER and being in massive pain for a few days, I am healing.  I have been in a splint.  I go in tomorrow to discuss surgery, but I don't see it.  I have improved 90 percent in the last few days.  "I raised a Marine -- I'm tough"...

So, without much more complaining and worrying and crying on your shoulder, below is the subject of the matter.  You can intake, partake, share or reveal any information you have with me, whether it be about ChemoSabe or someone else that relate to any of the side effects. 

(Don't tell -- but I'm still worried about the eye issue and I plan to do something about it).

My biggest concern is the RPLS listed below....  As I said.... I am always looking back...
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Caregiver Information

Whether you are a spouse, child, parent, or other relative, a neighbor, or a friend—if you are helping someone with multiple myeloma or relapsed mantle cell lymphoma (MCL), you are a caregiver. Maybe you help this person make decisions about their treatment, maybe you lend a hand with everyday chores around the house, or maybe you provide emotional support. Whatever it is you do, it is no doubt very important to the person who is coping with cancer.

While you’re helping your loved one cope with multiple myeloma or relapsed MCL, you may be faced with your own set of challenges. This section discusses ways to help you handle those challenges.

Assistance for VELCADE® (bortezomib)

Multiple myeloma and relapsed mantle cell lymphoma often require complex treatment regimens, so it is important to understand how your insurance coverage works and how to pay for treatment. Millennium, the maker of VELCADE, wants to help. Call the VELCADE Reimbursement Assistance Program (VRAP) at 1-866-VELCADE (835-2233), option 2, a toll-free line, to talk with one of our counselors. VRAP is available from 9:00am to 7:00pm EST, Monday through Friday.
Learn more about the VELCADE Reimbursement Assistance Program.

NEXT: Emotional Support

Important Safety Information for VELCADE® (bortezomib)

What is VELCADE® (bortezomib) Used For?

VELCADE is approved for the treatment of patients with multiple myeloma (a cancer of the plasma cells). VELCADE is also approved for the treatment of patients with mantle cell lymphoma (a cancer of lymph nodes) who have already received other treatments.

Who Should Not Receive VELCADE?

Before you receive treatment with VELCADE, tell your doctor about all of your medical conditions. You should not receive VELCADE if you are:

allergic to bortezomib, boron or mannitol

pregnant or plan to become pregnant

breastfeeding. Discuss with your doctor when it is safe to restart breastfeeding after finishing your treatment.

The effects of VELCADE in children have not been evaluated.

How is VELCADE administered?

VELCADE is prescribed by a physician experienced in the use of medications to treat cancer. It is administered as an injection into your vein (IV) by a health care professional.

What are the Possible Side Effects of VELCADE?

VELCADE can cause serious side effects including:

Neutropenia (low levels of neutrophils, a type of white blood cell) and Thrombocytopenia (low levels of platelets). VELCADE can cause low levels of white blood cells (infection fighting cells) and/or platelets (clot-forming cells). You will have regular blood tests to check your cell counts during your treatment with VELCADE. If the number of these cells is very low, your doctor may change the dose and/or schedule of VELCADE. If your white blood cells become low, you can be at higher risk for infections. Tell your doctor if you develop a fever or believe you have an infection. If platelets become very low, there is an increased risk of bleeding. Your doctor may recommend a platelet transfusion. There have been cases of bleeding in the stomach, bowels and brain during treatment with VELCADE.

Gastrointestinal Problems. VELCADE treatment can cause nausea, vomiting, diarrhea, and constipation. If your symptoms are severe, your doctor may recommend IV fluids and/or medications.

Peripheral neuropathy. VELCADE can cause damage to the nerves, a condition called peripheral neuropathy. You may feel muscle weakness, tingling, burning, pain, and loss of feeling in your hands and feet, any of which can be severe. Tell your doctor if you notice any of these symptoms. Your doctor may change the dose and/or schedule of VELCADE or stop it altogether.

Low blood pressure. VELCADE can cause a drop in blood pressure. Tell your doctor if you have low blood pressure, feel dizzy or feel as though you might faint. If you are taking drugs that lower blood pressure, your medications might need to be adjusted. If you are not drinking enough liquids, your doctor may need to administer IV fluids.

Heart problems. VELCADE treatment can cause or worsen heart rhythm problems and heart failure. Your doctor may closely monitor you if you have, or are at risk for, heart disease. Tell your doctor if you experience chest pressure or pain, palpitations, swelling of your ankles or feet, or shortness of breath.

Lung Disorders. There have been reports of lung disorders in patients receiving VELCADE. Some of these events have been fatal. Tell your doctor if you experience any cough, shortness of breath, wheezing or difficulty breathing.

Liver disease. If you have liver problems, it can be harder for your body to get rid of VELCADE. VELCADE has caused sudden liver failure in patients who were taking many medications or had other serious medical conditions. Symptoms of liver problems include a yellow discoloration of the eyes and skin (jaundice) and changes in liver enzymes measured in blood tests. Your doctor will closely monitor you if you have liver disease. In patients with moderate or severe liver disease, VELCADE should be started at a lower dose. Additional dose adjustments may be made based on your tolerance of the drug.

Tumor Lysis Syndrome (TLS). TLS can occur with cancer treatments and your doctor will be monitoring blood and urine for any signs of this syndrome. If you develop TLS, your doctor will take appropriate steps to treat it.

Reversible Posterior Leukoencephalopathy Syndrome (RPLS). There have been reports of a rare, reversible condition involving the brain called RPLS in patients treated with VELCADE. Patients with RPLS can have seizures, high blood pressure, headaches, tiredness, confusion, blindness or other vision problems. VELCADE treatment should be stopped in cases of RPLS.

The most common side effects seen in patients receiving VELCADE include: thrombocytopenia, neutropenia, nausea, peripheral neuropathy, neuralgia (nerve pain), pyrexia (high temperature), diarrhea, anemia, leukopenia (low levels of white blood cells), decreased appetite, fatigue, constipation, vomiting, dehydration, dyspnea (difficulty breathing), cough, asthenia (low energy), insomnia (trouble sleeping), peripheral edema (swelling of the limbs), and headache.

What other information should you discuss with your doctor?

You should also tell your doctor if you:

have kidney disease. If you are on dialysis, your doctor will administer VELCADE after the dialysis procedure.

are taking medication for diabetes. VELCADE can affect your blood glucose levels. Your doctor may require close monitoring of your blood glucose levels and change the dose of your diabetes medicine while you are being treated with VELCADE.

have liver disease.

are using medicines like ketoconazole (an anti-fungal) and ritonavir (an anti-viral), which will require close monitoring during treatment with VELCADE.

are using any other medications (including over the counter drugs), herbal or dietary supplements, or holistic treatments.

develop a rash of any type while receiving VELCADE.

The side effects of VELCADE may impair your ability to drive or operate machinery.

Colloquy -- Word for the Day -- Thursday, August 5, 2010

Colloquy

Definition:  conversation, dialogue;  a high-level serious discussion : conference

First out of the gate -- Is it hot enough for you?   Don't answer that.

Labs have been tremendous the last month.  Platelets were down to 70 and he had a colloquy with Infusion he get a bag.  Can you believe it?  When this started he didn't have a clue what platelets were.  He didn't get any.  He certainly isn't low enough.  Maybe if he gets down below 50.

I have see a big increase in his bruising and thin skin.  The top of his left hand continuously stays black.  The bruises are so thin that they will bleed easily.  They are like a big blister with fluid in them.  If one is pierced the blood gushes.  He carries an inventory of band aids in his wallet.  These bruises are larger that half dollars.  The Infusion nurses tell him it is because his platelets are low.  Hence the last paragraph.  I have read up on the internet that could be a cause, but Velcade is a cause, also.

Our new addition to the family has been with us for two weeks.  She is adorable.  We have finally come up with the name -- Sugar.  She is pure white and as sweet as sugar.  She is very well mannered.  She is starved for attention and is very hyper right now.  She is a year old and I believe she is coming into season.  We are calling the vet.

At my last writing I had not mowed in two weeks.  Well, that ended up being three.  With the workers at the house and with the heat, I had just not gotten out.  BUT, last weekend, in the heat of the day, ChemoSabe and I wandered out into the straw like grass and began our task.  He mowed the front with the self propelled and I got in the big dog yard on the rider.  It was the first time he had mowed in about three to four years.  He worked up a good sweat.  Well, so did I.  It was like old times.  We really enjoyed it.

Tomorrow is our big day.  It will be our 23rd anniversary.  Just doesn't seem possible.  We had a rocky first year, but as you can tell, we worked it out.  Doesn't everyone have a bad first year?

My little friend in one of the guest houses that has Multiple Myeloma got to go home last weekend.  She had a rough time this last visit.  She came in for her second stem cell transplant and her counts just wouldn't come up very good.  Her WBC was down to .11.  I didn't get to see her or visit this time, but I did get to spend some time with her mom.  Do you remember what the major low zone is for the WBC?  Raise your hand.

Stan, another patient from same house, continues to experience problems with low platelets.  The doctors have instructed him to get plenty of rest.  He started on the Revlidmid and was back off onto the Thalidomide.  Coincidentally, Maggie and Stan live in the same city in Florida.

Our house is complete except for five small details.  I haven't moved everything back into place, yet, but I can see it coming together.  We still have a lot of items in our small living room, but not as bad as before.  We are loving the new tile and so are the kids.  It is a lot cooler on them.

ChemoSabe continues to travel each week.  Our gas charge cards are massive.  He spends on an average when he travels, $100.00/day on gas.  It is at $2.59 now in Benton.  Last Thursday I was lazy and didn't get gas at $2.38.  When I got out on Friday afternoon, it had risen to the $2.59.  That's what I get. 

Well, Kids... I just wanted to update you some.  It ain't much...but, better than nuthin..

Good afternoon and Love -- Pepper