Tuesday, July 20, 2010

Hospice Care

Norman had a fall on Monday, 12th July and since then he was unable to walk or to stand on his own. This is a big blow to him as he was still able to walk about the house slowly on his own prior to his fall. Now he is wheelchair bound and need assistence round the clock. Even basic toilet routines and showers is a struggle to me now. I need help! Due to the constant stress and my insomnic nights, I suffered a vertigo attack on 18th, Sunday night, It was so bad that I could not get up as the room was spinning like crazy. I was vomitting, having diarrhea and felt like collapsing at any moment! My children manage to get some medication from our family Dr and I improved after taking them. Will need to continue taking the medication for a few more days.

Dr Ibrahim refered us to Hospice and the hospice nurse and Dr came to see us at our home. They are very kind and helpful and highly specialize at looking after terminal patients. I was given medication to stand by in case Norman have an epileptic seizure and also emergency phone number when I need help urgently. The hospice physiotherapist came today but Norman was in such a foul mood, he wouldn’t let them come near him. He was shouting NO NO NO at them!! I was exasperated, disappointed and sad! They will come again and I pray I can pacify him to have some form of exercise. His muscle is so flabby and have started to degenerate over this 2 passive weeks!

I would like to thank Dato Jeffrey for the I pot.Now whenever Norman is angry or depress we get him to listen to some soothing music to ‘cool’ him down. Many thanks to all my lovely girl friends who came to help and support me in this painful times. Thanks to Moi, Irene, Annie, shirlin, Yew Ai and Dorcas. May God bless you all.

Saturday, June 19, 2010

Terminal Brain cancer and steroid management

When a patient enters stage IV of brain cancer there is no more a hospital can possibly do to rehabilitate him and the patient is told to return home. Stage IV is the final and most invasive, extreme and painful stage. In this stage the tumor has metastasized out of control in the brain, swelling the tumor until it can no longer be reversed.

In this stage, the cancerous cells creating the brain tumor metastasize wildly, producing more and more deadly cells in the brain, causing the tumor to swell intensely and overtake the brain. The tumor quickly begins to effect cognitive functions such as thinking patterns, thought processing and abilities to grasp abstract concepts. Motor skills will fail as well and the patient may fall, be unsteady and uncoordinated, and possibly suffer muscle spasm. The patient's speech patterns will deteriorate along with thoughts and he may be incoherent, stop in the middle of sentences or relate stories or sentences with no logical reason.

I spoke to Dr Lee and he suggest I increase Norman's steroid dosage as he had 2 epileptic attacks and his condition is "very serious".

There are several ways that Decadron increases at this stage can mean good palliative care for the patient...although sometimes with a mixed bag of results.

Edema elsewhere in the body has the luxury of pushing soft tissue outward or into other structures with far fewer ramifications than in the brain.There just isn't much room when swelling occurs in the brain.This swelling results in increase intracranial pressure and can cause a number of effects that begin to impact quality of life and comfort.

Occasionally, depending on the location of the tumor, this swelling will cause midline shift. The midline is a central boundary separating the left and right hemispheres. Even when tumor hasn't crossed over from one hemisphere to the other, the edema caused by the tumor's presence can still push the midline out of alignment, causing new tumor-like symptoms from this second hemisphere. When this happens, it's known as mass effect. When the midline shift is caused by swelling rather than tumor, and when the degree of shift is minimal to moderate, an increase of the steroid dose may be able to help shrink the swelling and restore the position of the midline.

How can you tell that swelling may be severe or may be under-addressed by the current dose of steroid?

The patient is sleeping excessively. When the patient is sleeping 20+ hours per day, is falling back to sleep soon after meals, dozes off even in the midst of full stimulation (eg, a room full of visitors), and seems too fatigued to enjoy things that had been previously enjoyable to him or her, this is a red flag for edema. Norman gets tire easily now and takes 2 naps in the day time.

The patient seems off the mark or fuzzy in several areas of function. One of the best indicators of swelling is when there are new symptoms or an increase in symptoms across the board, in several categories. For example, when the patient is newly incontinent, seems more confused than he or she did just days ago, is now slurring speech or leaving sentences unfinished, is fatigued, and has had a couple of falls while getting around the house, Norman fall off the chair once.

The patient is complaining of headaches, especially upon awakening. Head-ache is an easy indicator of swelling, particularly after the patient wakes up.

The patient is nauseous or vomiting. When swelling is severe, the three red flags are excessive sleep, headache, and nausea.

Maintaining an adequate steroid dose during this period can keep the patient comfortable and high-functioning for as long as possible. As the signs indicate that a previous dose is no longer adequate, requesting an increase can bring about improvements often within 48 hours.

With increases in the steroid dose, unfortunately, can come several side effects.

Mood/personality changes: Some patients experience a worsening of their mood or negative changes to their personality as the steroid dose goes up. Typical may be impatience, rudeness, sarcasm, childlike behaviors and anger.

Insomnia: Steroid perks a person up and difficulty to sleep is very common

Atrophy of the leg muscles: As the steroid dose is raised, keeping the legs moving becomes even more important, in order to keep a patient mobile for as long as possible. Physiotherapy here will help greatly.

Increased appetite: Many patients on "higher" doses of steroid experience a great increase in their appetite. Norman is eating quite well and is getting very rounded in the middle!

He is now fighting every step,refusing to give in to his skinny legs, hugh belly, swollen feet,shakiness, depression, anger, confusion, exhaustion, anxiety and poor coordination. May God gives us strength and courage to overcome this excruciatingly painful times.

Friday, May 28, 2010

Summary of tumor size and treatment

Date Size of Tumor (cm) Treatment
Year 2007




16-Nov-07


4.4 x 4.5 x 3.5


Surgery, Radiotherapy 30 fraction
Year 2008



1-Mar-08 1.9 x 1.2 x 0.9 Temodar - 6 cycles
3-May-08 1.9 x 1.2 x 0.10
13-Sep-08 1.9 x 1.2 x 0.11
30-Dec-08 1.9 x 1.2 x 0.12
Year 2009


4-Feb-09 3 x 3.5
16-Feb-09
Surgery, Glidel Wafer
30-Mar-09 3.4 x 3.3 x 4.8
1-Apr-09
CAAT DIET
9-Apr-09
Ruta Graviola
14-May-09 3.5 x 3.4 x 4.5
13-Aug-09 4 x 3.5
3-Nov-09 5 x 3.5 x 4
25-Nov-09
Surgery with 5 ALA

Year 2010



3-Jan-10
Stem Cells at Beijing
25-Feb-10 5.5 x 4.1 x 4.1 (New growth - 3mm)
10-Mar-10
Cytotron, Ruta Graviola
21-May-10 4.7 x 6.7 x 5.4 (New Growth - 2cm, 2 new growth <>
27-Jun-10
Stem Tech (AFA)



Sunday, May 23, 2010

MRI after cytotron

We had an MRI done on Friday, 21st May, about 6 weeks after cytotron treatment. Its bad news again. Sob! The damn tumor is now 6.7 x 4.7 x 5.4 cm. Its progressing! And thats not the only bad news! There is 2 small new enhancing tumor deeper in the brain! I am totally lost now. We dare not tell Norman about the new growth. We just told him that the tumor had increase very slightly. But I think he knows better as he is feeling weaker the past 1 to 2 weeks. The cancer is slowly consuming him, day by day. Oh God, why are you so cruel to him? Isn't there anymore good news for us? I wanted him to be one of the few who can "beat" this cancer but now our hope is now dwindling. I miss him so much. He is here but he is disappearing! Where is my husband who climb moutains, trek hills, who fixes eveything in the house, where is he who shares all my hope and dreams, his quick wit, his humor, his tender loving care. We were suppose to sit in our rocking chair, counting the stars from our balcony with our grand children! Now everyday is bittersweet and tinge with some underlying sadness. He is always angry, frustrated and miserable. But he is still here and he is my hero. We all love him with all our heart. My family and myself will give everything for him. We are still praying for a miracle.

Tuesday, April 27, 2010

Chemotherapy again?

Thank you to CW, Laureh and Zulkifli for your comments and suggestions.
We did talked to our oncologist about avastin and he told us that it is only about 20% effective at this stage. On top of that, it will cost about RM10,000 per treatment per month. Avastin or Bevacizumab works by interfering with the process of angiogenesis. It cuts off the supply of blood vessels to the tumor causing it to shrink.

Dr Ibrahim did suggest the chemo call Nimotuzumab.It is quite new and clinical trials are still on going. Its given by IV infusion and results shows significant benefits for high grade gliomas. I do not know the cost yet.

The other alternative treatment is a combination of DCA and Laetrile. I am still researching on it. DCA or Dichloroacetate is a toxic chemical that can cause imbalance, finger numbness and nerve damage. It did shrink tumor in rats but is not tested on humans yet. Thus it is not approve in US but some Canadian Drs are prescribing it to their patients.

We are still in the wait and see attitude as we just finished our cytotron not long ago. We certainly do not wish to jump into the chemo wagon as it is so toxic and damaging. Moreover Norman have had 6 cycles of Temodar in 2008. We are praying that the cytotron is effective in controlling the tumor growth. Will be repeating a MRI in June.

Dorothy

Tuesday, April 20, 2010

Completed cytotron treatment

We completed our cytotron therapy on the 8th April. It was a relief! To me, it was a renew hope. A hope that this will be the break through for Norman, that this will be the tretment that will cure him. BUT 2 days after he finished his treatment, he had a grand mal seizure! It happen early in the morning at 6.30am. He was lying in bed doing leg lifts when he felt twitching on his face. I sense something wrong and as i put my hand over his face, I started to pray. His hands and legs started jerking followed by his whole body jerking violently. His head was contorted to the side, his eyeball was rolled up, he was hissing saliva and gasping for air at the same time! I cried out to God for mercy. As a nurse I have seen patients having fits but nothing is more heart wrenching than seeing Norman suffering from such a severe fit. It lasted about 2 to 3 mins. He was daze for a few hours after that and he got weaker on the right side. I increased his fits medication and commenced steroids again. The cytotron Dr said that most probably its the edema causing the fits. It could be the tumor too.
We are still praying for god's miracle and we will continue to uphold our life to God. God is good, all the time.
May God bless you.

Sunday, March 28, 2010

Cytotron treatment- 18th day

We completed 18 days of the cytotron treatment today. So far there have been no improvement noticed. Norman's speech remain poor. He still could not speak a full sentence clearly. It is so frustrating sometimes. His right hand and leg is still weak and uncoordinated.

We have seen Dr Ibrahim at wijaya medical center and he suggested chemotherapy. However the MGMT report is not favourable for him to go back on Temodar and he might need other newer chemo drugs. I dread these awful drugs and its side effects! We feel that it is too toxic and too damaging and is hesitating to start on it. Dr Ibrahim does not agree on the cytotron treatment and suggest we stop it. Sob! What can we do now? Any suggestions? I am at my wit end!

Dorothy.