Thanks Darza- 4 days later… I still feel Yucky, and You’re Sabotaging my Party

3.25.17

Dear Darzalex,

Thank you for improving my myeloma status, and pummeling those invasive no-good cells, but what’s going on here?! Each day since Infusion-Day-Tuesday, I have felt yuckier and yuckier… I feel “flu-ish”, achy, so extremely fatigued, tired, headachy, dizzy, blurry and so incredibly ouchy, without relief or a break. I thought Velcade was “the” culprit, and kicked that treatment outta my life last week.

But Darza, perhaps Velcade is only partially responsible for my “misery”, maybe exacerbating your side effects? Maybe the ouchy nerve pain is really you Darza, afterall? Maybe you are the cause of all these yucky side effects? Guess I underestimated your powers. I don’t have the extreme debilitating, burning nerve pain from earlier in the month, but these current super ouchy-achy-flu-like symptoms are just doing me in. Is this you Darza? Or Velcade’s delayed 2nd life? Or is this you Pomalyst, after just a few pills? I know the power of killing myeloma is in the multiple “agents” combined together, but this “torture” supports my previous rants about being on one chemo/immunotherapy at a time, so I can isolate which side effects are from what. I meet with my SCT Dr on Monday March 27, so we’ll see what his take is on all of this is…
C’mon myeloma, can’t you cut me a break… it’s my son’s birthday today.

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• Infusion reactions. Infusion reactions are common with DARZALEX^® and can be severe. Your healthcare provider may temporarily stop your infusion or completely stop treatment with DARZALEX^® if you have infusion reactions. Tell your healthcare provider right away if you get any of the following symptoms:
  • shortness of breath or trouble breathing
  • dizziness or lightheadedness (hypotension)
  • cough
  • wheezing
  • throat tightness
  • runny or stuffy nose
  • headache
  • itching
  • nausea
  • vomiting
  • chills
  • fever
• Changes in blood tests. DARZALEX^®
  can affect the results of blood tests to match your blood type. These
  changes can last for up to 6 months after your final dose of DARZALEX^®. Your healthcare provider will do blood tests to match your blood type before you start treatment with DARZALEX^®. Tell all of your healthcare providers that you are being treated with DARZALEX^® before receiving blood transfusions.
• Decreases in blood cell counts. DARZALEX^®
  can decrease white blood cell counts which help fight infections and
  blood cells called platelets which help to clot blood. Tell your
  healthcare provider if you develop fever or have signs of bruising or
  bleeding.

• tiredness
• nausea
• diarrhea
• shortness of breath
• fever
• cough
• muscle spasms
• back pain
• cold-like symptoms (upper respiratory infection)
• nerve damage causing tingling, numbness or pain
• swollen hands, ankles or feet

Tell your healthcare provider if you have any side effect that bothers you or that does not go away.

These are not all the possible side effects of DARZALEX^®. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

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Or is it you POMALYST?

POMALYST can cause serious side effects, including:

• Low white blood cells (neutropenia), low
  platelets (thrombocytopenia), and low red blood cells (anemia) are
  common with POMALYST, but can also be serious. You may need a
  blood transfusion or certain medicines if your blood counts drop too
  low. Your blood counts should be checked by your healthcare provider
  (HCP) weekly for the first 8 weeks of treatment and monthly after that.
• Severe liver problems, including liver failure and death. Your
  HCP should do blood tests to check your liver function during your
  treatment with POMALYST. Tell your HCP right away if you develop any of
  the following symptoms:
  • Yellowing of your skin or the white parts of your eyes (jaundice)
  • Dark or brown (tea-colored) urine
  • Pain on the upper right side of your stomach area (abdomen)
  • Bleeding or bruising more easily than normal
  • Feeling very tired
• Severe allergic and skin reactions. Call your HCP
  if you have any symptoms of an allergic reaction, including: swelling of
  your lips, mouth, tongue, or throat; trouble breathing; or skin
  reaction.
• Dizziness and confusion. Avoid taking other
  medicines that may cause dizziness and confusion during treatment with
  POMALYST. Avoid situations that require you to be alert until you know
  how POMALYST affects you.
• Nerve damage. Stop taking POMALYST and
  call your HCP if you develop numbness, tingling, pain, or a burning
  sensation in your hands, legs, or feet.
• New cancers (malignancies). New
  cancers, including certain blood cancers (acute myelogeneous leukemia or
  AML) have been seen in people who received POMALYST. Talk with your HCP
  about your risk.
• Tumor Lysis Syndrome (TLS). TLS is
  caused by the fast breakdown of cancer cells. TLS can cause kidney
  failure and the need for dialysis treatment, abnormal heart rhythm,
  seizure, and sometimes death. Your healthcare provider may do blood
  tests to check you for TLS.
• The most common side effects of POMALYST include tiredness,
  weakness, constipation, nausea, diarrhea, shortness of breath, upper
  respiratory tract infection, back pain, and fever.
• These are not all the possible side effects of POMALYST. Your HCP
  may tell you to stop taking POMALYST if you develop certain serious side
  effects during treatment. Call your HCP for medical advice about side
  effects. You may report side effects to FDA at 1-800-FDA-1088.

What other important information should I know?

• Blood clots in your arteries, veins, and lungs, heart attack, and stroke can happen if you take POMALYST. Most people who take POMALYST will also take a blood thinner medicine to help prevent blood clots.

Before taking POMALYST, tell your healthcare provider:

• If you have had a blood clot in the past
• If you have high blood pressure, smoke, or if you have been told you have a high level of fat in your blood (hyperlipidemia)
• About all the medicines you take. Certain other medicines can also increase your risk for blood clots

Call your healthcare provider or get medical help right away if you get any of the following during treatment with POMALYST:

• Signs or symptoms of a blood clot in the lung, arm, or leg may include: shortness of breath, chest pain, or arm or leg swelling
• Signs or symptoms of a heart attack may include:
  chest pain that may spread to the arms, neck, jaw, back, or stomach area
  (abdomen), feeling sweaty, shortness of breath, feeling sick or
  vomiting
• Signs or symptoms of stroke may include:
  sudden numbness or weakness, especially on one side of the body, severe
  headache or confusion, or problems with vision, speech, or balance

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I just can’t tell if I am getting better or worse. These side effects are really throwing me a curve. And to think I “complained” for years about the “volcanic, surprise” diarrhea from Revlimid. What’s that ole saying… “be careful what you wish for”!