13 April 2009

Calm Before the Storm?


Since things were fairly unchanged over the weekend concerning Ford , I took a break from posting (an Easter/Spring break?). (-:

We had a wonderful Easter weekend and hope that you all did also!

Ford has been able to keep his weight up and is now very close to what he was when he considered it to be in normal range. We hope that with the third and fourth treatments, he will be able to continue to curb any nausea and maintain his appetite. From what I have read, many of the side effects kick up a level or two with the next two treatments.

Tomorrow we go back to the HCI for treatment #3 (we hope).

We have been researching the Neulasta shot that the doctor has ordered Ford to take with his treatments. We have also been gathering input from people that have first hand experience from taking Neulasta. We have some huge concerns about the shot, its side effects, and the meds that may be needed to curb the side effects.

Neulasta is something that is being giving after each chemo treatment to help boost the WBC counts very rapidly so that the treatments can continue being administered on a regular course. It has some great reviews as far as doing what it is meant to do. However, 57% of the patients receiving Neulasta experience moderate to severe bone pain for anywhere from 4 to 7 days. This pain often begins the day after injection. It is usually centered in the bones with the highest density of bone marrow, i.e. pelvic area, spine, upper legs, and clavicle. The most common tag that patients give Neulasta is "the shot from h---." For some, the pain has been so intense that it hasn't been worth continuing with treatment. Some patients have taken Aleve, Advil, or some other form of ibuprofen for the pain. Aspirin works for some. Ford cannot take any of these because of his blood thinner and because of his ulcer. Some take prescription pain killers (which is what one of the doctors who is prescribing the shot has suggested). This concerns me. Most prescription pain killers are effective for pain, but they also create a problem with normal abilities to function (hence the warning not to drive, operate heavy machinery, or make important decisions, etc.). Since the episode with Ford the day after the first chemo treatment, we have felt it very important that Ford be able to be coherent enough to communicate when things aren't "right." He had every symptom that would indicate his sodium levels were dropping at an alarming rate, but because we had given him the medications that are routinely prescribed for post chemo related side-effects, no one picked up on the red flags that were waving right in front of us. The medications had side effects that were so similar to the signs of the impending hyponatremia that it was assumed that it was the medication. And the meds made Ford so "loopy" that he couldn't communicate what was happening. It could have been fatal. I firmly believe that the prayers being said by so many friends and family were what made a difference to ensure that the series of circumstances that followed his seizure all worked for his well-being.

Besides increased nausea, hair loss, headaches, and fever, there are many more side effects to Neulasta that create enough concern for us that we feel it important that Ford be able to communicate accurately any changes that may occur. Some of the side effects are listed as life threatening. If the signs for a side effect is pain in the ribs and shoulder blade and fever, how does one distinguish between that pain, fever, and nausea and the pain , the fever, and nausea
some experience "normally" from the Neulasta? For us, it is a conundrum.

There is a chance that Ford might be in the 43% that will not experience bone pain. Hmmm. Are we willing to take that chance based on Ford's track record? Who would willingly take the chance to put him through more than he has already experienced (knowing that things all ready have the potential to get rougher with the next two treatments).
Tylenol may help take the edge off and a couple of people have reported that Claritin taken the day before receiving the shot has helped reduce the pain level somewhat. The decision is ultimately up to Ford.

The bottom line is that we are praying for wisdom and guidance. We are also praying for wisdom, guidance, and inspiration for those doctors and other medical personnel caring for Ford. We pray that their hearts will be compassionate and that their minds will be opened to what might be best for Ford and his circumstances. We believe that the doctors we are working with currently are intelligent with a vast amount of knowledge and experience. We are praying that they will draw from that wealth and be able to "think outside the box," as needed, and look at all possible alternatives. Also in our prayers we are asking for the ability to communicate our feelings and concerns in a clear, concise manner and to be able to do it without offense.

If those of you reading this feel so inclined, would you include us (or continue to include us) in your prayers, please. We are grateful to you and for you.
Thank you from the depths of our hearts.

3 comments:

  1. Yes, we continue to pray for you. You are really working hard to understand all this, not just relying on the doctors to tell you what to do. We feel you are a good example and you will be in my heart and mind and prayers throughout tomorrow.
    Lynn

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  2. We do every morning and night. Put his name on the prayer roll Friday. Good luck tomorrow.
    Love you guys

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  3. You are in our prayers and our hearts! Here is a verse that helped me a lot a couple of years ago when I was dealing with my auto-immune skin disease:
    (NCV version)
    Psalm 103:1-5
    All that I am, praise the Lord;
    everything in me, praise his holy name.
    My whole being, praise the Lord
    and do not forget all his kindnesses.
    He forgives all my sins
    and heals all my diseases.
    He saves my life from the grave
    and loads me with love and mercy.
    He satisfies me with good things
    and makes me young again,
    like the eagle.

    I still have that posted on my bulletin board at work.... still pray it occasionally. Hope it lifts you up!

    Love you,

    Sara

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