Four Weeks of In-Home Hospice Care

Four weeks have gone by since Lisa was admitted to the in-home hospice program. I can’t believe how fast the time has passed.

The hospice folks have been wonderful, providing as much, or as little, support as we request. A nurse comes by three or so times a week to check Lisa’s condition and bring or order any supplies or medicines we may need. An aide drops by a couple days a week to massage lotion onto Lisa’s legs, give her a sponge bath, or just be with her so I can run errands. Volunteers come over anytime we may need some extra help.

Her pain seems to be fairly well managed, but she is starting to complain of pain in more areas of her body (neck, throat, ribs, back, belly), especially when I need to move her while changing cloths or bedding. Since she can’t swallow, she receives her pain meds through an IV, which allows us to easily give her an extra shot of meds to help deaden the pain.

Lisa is exhibiting several signs that indicate she is entering her final days. She has no appetite and has not eaten anything in a couple weeks. Swallowing is very difficult and painful. Eating ice chips or sipping water results in a coughing fit, which limits her ability to intake fluids. Needless to say, she is extremely weak and emaciated. Her ability to talk and concentrate has declined severely. She spends most of her time resting comfortably in bed drifting in and out of sleep.

When she is awake and aware, she continues to be as upbeat as always even though she knows that she is dwindling slowly away.

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Posted in Hospice | 6 Comments

In-Home Hospice Care

This was a very difficult post to write. I started it in several different ways, none of which seemed satisfactory. So I’ll just say it straight out. Yesterday afternoon, Lisa was admitted to an in-home hospice program.

MGH last visitHer weakness, fatigue, weight loss, and metastatic disease, have all progressed to the point where in-home hospice care is the best option for her at this time. This program will allow her to remain at home and still get the palliative care, nursing services, and equipment required to make her as comfortable as possible.

For the past year or so, her weight has been continually declining. I’m guessing that she is down to about 100 pounds, but we don’t know for sure since she is so weak that she can’t stand on the scale by herself. The last accurate reading was 104 a couple of weeks ago. The recent colitis (bowel inflammation) episode seems to have subsided, but she still experiences periodic nausea and belly pain, especially after eating. Obviously, this hinders her ability to maintain or gain weight.

Due to weakness and fatigue, someone needs to support her anytime she is on her feet. Since the short trip to the bathroom will exhaust her, she spends much of her time in bed. Because getting her into and out of bed is a struggle, hospice is delivering a hospital bed to the house today. This bed will be a much more convenient when helping her move around and should be much more comfortable for her due to its adjustability.

She has been off of treatment for just over a month and there is evidence of disease progression. One can easily see and feel enlarged lymph nodes on the left side of her neck and she does complain about pain in this area. She hasn’t had any scans recently, but I fear that other affected areas are beginning to progress as well.

Unfortunately, she is too weak to be considered for another course of treatment at this time. And, the fact of the matter is that, there are no good treatment options left. The quiver is empty.

Not surprisingly, Lisa continues to remain positive and in good spirits.

Posted in Hospice, Uncategorized | 34 Comments

Lisa’s Back Home, Yippee!

After a three day stay at MGH the colitis afflicting Lisa subsided enough for her to return home. She is feeling much better and is extremely happy to be back to the peace and quite of the lakeside. Even though there is still inflammation in her colon, she is able to tolerate a very mild diet. To help speed her recovery, she is on a course of steroids to reduce the swelling and she is still off the trial drug, GDC-0032.

We will see her oncologist next week to discuss the available options for treating the metastatic disease.

Thank you everyone for your comments, thoughts, and prayers.

Posted in Colitis | 5 Comments

Colitis Interuptuses GDC-0032

GDC-0032 is in a new class of cancer treatment drugs know as “targeted therapy”. The name refers to the fact that these drugs primarily focus on cancer cells, leaving healthy cells alone. For over 6 months, Lisa has been on a phase I clinical trial of GDC-0032 and it has kept her disease from progressing. One of the potential side effects of GDC-0032 is inflammation of the colon (colitis). Unfortunately for Lisa, this potential has become a reality.

Signs of colitis first appeared about three weeks ago and she was taken off the drug at that time. Since then, her abdominal pain and nausea has continued to worsen. Yesterday, she was admitted to MGH in order to get the situation under control. Thanks to pain meds and IV fluids she is resting much more comfortably. They have her on a no-food diet in order to rest her bowels.

As I write this, we are waiting for the specialist to show up and let us know what they have planed for her today.

Posted in Colitis, Uncategorized | 11 Comments

Happy Birthday Lisa!

2013 spring hot tubWe could not have asked for better weather for Lisa’s birthday. The sun is out and the temperature should hit near 70! Perfect for a soak in the hot tub while enjoying the view of the mountain with its trees turning green.

She is feeling pretty good and goes for a short walk and a hot tub everyday. Her latest set of scans show that the current treatment is continuing to work; there is now sign of disease progression. This is great news and she has now started on her sixth cycle of GDC-0032.

Hope everyone is having a great spring!

Posted in GCD-0032, Uncategorized | 13 Comments

Positive Results for GDC-0032

A wonderful spring is on its way to the Granite State. The igloo has melted, the lake has thawed, and Lisa continues to respond well to her current treatment. She just started the fifth, 28-day cycle of GDC-0032 and the main side effects continue to be weakness and fatigue.

Lisa is not alone in responding well the GDC-0032. Just this week, at the Annual Meeting of the American Association of Cancer Research, very positive results were reported for the GDC-0032, phase 1a, clinical trial*. Lisa is in the phase 1b group and the result of her study group will be reported at a later date.

Have a great spring 2013!

* Here’s a link to an article about the clinical trial results:

Next-Generation PI3 Kinase Inhibitor Demonstrated Early Efficacy, Safety

Posted in GCD-0032, Uncategorized | 6 Comments

T-DM1 Receives FDA Approval

On February 22, 2012, the FDA approved Kadcyla, formerly know as T-DM1, for treatment of patients with HER2 positive breast cancer. Kadcyla is new type of targeted cancer treatment known as an antibody conjugate. It combines the antibody trastuzamab (Herceptin) with the chemotherapy agent DM1. The main advantage of this type of treatment is that the chemotherapy agent is delivered directly to cancer cells leaving healthy cells unharmed, resulting in more effective treatment and far less side effects than standard chemotherapy.

As mentioned in previous posts, Lisa received T-DM1 as part of a Phase III clinical trial. This treatment worked well for six months before her disease began to progress once again. Six months without disease progression is a typical response for this drug. Six months may not seem like much, but in late stage cancers, it’s a huge number, which is why this is a big step forward in cancer treatments.

Here is a link to the Genentech press release:

Outside the Igloo

Outside the Igloo

Lisa is now in a Phase I clinical trial of another very promising new drug, GDC-0032. She is on day 17 of cycle 3 and is having a very good response. Her latest CT scans showed a 32% decrease in the parotid gland tumor and some of the lymph node tumors are no longer detectable! Lisa’s medical team was very excited with these results since the goal of the treatment is disease stability. To see disease regression is wonderful news.

So, we will stay the course. Lisa will continue taking GDC-0032 and enduring periodic scans to monitor the disease. She is feeling pretty good and taking fewer pain meds.

She even helped out with the igloo!

Posted in GCD-0032, T-DM1 & Systemic Treatment, Uncategorized | 6 Comments