Semi conscious

Norman is getting weaker with each passing day. For him the days and night have melted into unending drowsiness and lethargy. Yesterday his body was cold in the morning and burning hot with fever in the evening! It really sucks! Life is at an all time low now. Today he is semi conscious, he could barely open his eyes anymore. I try to syringe some prosure and steroid into his mouth but it only flows out from the sides. The hospice nurse came and set up 2 sub cutanous line, like an IV line to infuse saline into his dehydrated body.I need to insert rectal panadol regularly to bring down the fever and the rest will be up to God.Please pray for mercy and for peace when the angels comes for him.

The Hypothalamus

The Hypothalamus is the control center of all autonomic regulatory activities of the body. It has been said that the hypothalamus is the brain of the brain. It is the hub for automatic and endocrine homeostatic systems such as cardiovascular, temperature, and abdominal visceral regulation. It manages all endocrine hormonal levels, sensory processing, and organizing body metabolism, as well as ingestive behaviors. It appears that almost everything the Hypothalamus does is related in some way to the management of brain and body connection, linking the psyche (mind) to the body
Very simply, the Hypothalamus organizes and controls many complex emotions, feelings and moods, as well as all motivational states including hunger, appetite and food intake, and everything to do with the concept of pleasure including satisfaction, comfort and creative activities.
When the Hypothalamus is not working correctly, when it’s not functioning up to par, the wrong neuro-signals are generated and the wrong neuro-messages are received, resulting in an inaccurate integration of all our sensory input.
Some of the physical aspects of Hypothalamic dysfunction are: Disordered sleep, Multiple hormonal dysfunctions, Immune dysfunction, Autonomic dysfunction, Altered body temperatures.

On sunday right till Monday, for more than 24 hours, Norman could not close his eyes! He was very tire but could not sleep! His eyes was open throughout sunday night and monday too. I thought he was sleeping with his eyes opened!! I called hospice and was told to give him 5 mg haloperidol to help him sleep. It work! He slept well on Monday night. On Tuesday morning he appears bearably well till about 9.30am. His hands have turn icy cold, only his hands. His leg was slightly cold but his body was normal.What happened?? The tumor have reach the hypothalamus. As you read above, he is now experiencing hypothalamic dysfuntion. His circadian rythym is out. His body cannot recognize the normal sleeping pattern of night and day,and his body temperature have gone hay wire! Good grief! What is this monster doing to him. Oh God,he have suffered enough! Have mercy. Call your angels and take him home. This is our prayer now.

A slow and heartbreaking decline

Its now exactly 1 year since Norman had his 3rd surgery and exactly 3 years since diagnose with GBM on Nov 16 2oo7. His last MRI done in May this year have shown extensive growth and edema. Since July he could no longer walk but he could still sit up, eat well with his left hand and was alert and responsive. He could still smile occasionally too! On Sept 4th he could even sing Happy Birthday to my son Benny! We just celebrated my birthday on Nov 3rd but alas he could not even say happy birthday to me. But I thank God he is still with me and he is still my hero, my husband, my man!

Last week he had a big nasty scrotum abscess which rupture and leaks copious amount of pus and blood! It was horrendous!! but that was not the end! He had another abscess again and the hospice dr need to do an incision and drainage. It was done at home and boy, it was painful even with local anaesthetic! Norman was shaking like a leaf! Damn! I don't want to ask why but I couldn't help it.

He can hardly swallow now and chokes easily. Preparing his diet is a momentous task for me everyday. All food needs to be soften, smashed, blended and most juices make into jelly so that he can swallow it easier.

I can't think much these days. Some days are harder and I can sob miserably till i am exhausted, somedays I am thankful that God have given me the grace to plow on. I live day by day, hour by hour. May God bless you.

Feeling unable to cope

It is now getting difficult to transfer Norman from bed to wheelchair or the commode chair even just next to the bed. He is even getting weak on his good side(the left side). The right side is completely gone and we struggle to balance him on whatever strength he has on is left side. Most of the time I get that kind of vacant look or cold stares from him as though he doesn't know who I am or what I am doing. The physiotherapist describe him as in a state of stupor or a poor state of mental fogginess. As of a few days ago he have stop calling for me which is what he usually does when he needs my attention or when he is in discomfort. To add on to all these problems Norman is now unable to swallow and eat well. He chokes easily even on porridge and water. While sitting up he evens chokes on his own saliva. Preparing his meals and feeding him is a big challenge for me every day.
My body is weary and my heart is burden. At time i feel unable to cope, I feel so helpless, so sad. Please keep us in your prayers. I need more strength and courage from God.

Incontinence and urine catheter

Norman was put on Haloperidol (to calm him) and Sertraline, an anti depressent since late July. The haloperidol was mildly effective but I feel the sertraline didn't really helped him. All drugs are with side effects and these two "happy pills" that Norman is taking contributed to his urine incontinence. No matter how hard he tried, he just could not control his bladder muscles. He need to wear adult diapers day and night and in spite of that he still leaks and gets thoroughly wet at night. His skin is red and moist and he needs constant cleaning all the time. Hospice nurse put in a urine catheter which need to be change once in 2 weeks. Yesterday I change it to a silicone catheter which can last up to 2 months without changing. It was very painful for Norman when the hospice nurse inserted the cath and he was tense and screaming! My poor beloved have been so brave all these while but I can see him crying and breaking down silently, his tears just roll down at the corner of his eyes. This crazy disease is like a roller coaster. Some days I fear that he is slipping away and some days he is more alert. All these fluctuations keep me on my toes and even keep my hopes up!
I live one day at a time and continues to ask God for mercy. God bless you all.

Personality change

Norman is not the same anymore. Its still him, but the light from his eyes is not there anymore. Its almost gone! His character, his personality have change completely.His attention span can be measured in nanoseconds! He shouts and scream in frustration most of the time! Sob! I wonder if he understand us at all now. He does not comprehend time and place anymore but he can still recite the alphabets or count 1 to 30!He repeats whatever I said over and over again for hours!!
It's hard but I try my best to let him know I love him no matter what. When I hug him he could still put his good hand around to hug me too!
Will the lights come back? Will it at least brighten a bit? Can God give us a miracle? Please pray with us. By his stripes, we are healed. Amen.
Dorothy

Hospice role in allevating emotional stress

The unbelievable suffering this cancer is doing to Norman and my family is overwhelming. We did everything possible but still could not stop its aggressive attack. Nobody who have not experience this type of cancer can actually understand the mental and emotional torture he is going through.The exhaustion and mood swings along with the depression is just too much for Norman to bear.It breaks down his fighting spirit and he just give up!I was very glad when hospice arrange for a psychiatrist to evaluate Norman's metal status.
A major focus of hospice care is on the emotional effects of the illness on the patient and his family. Helping Norman to recognized that his fears, anger, frustration,etc are normal reaction to his illness would help us understand him better. The psychiatrist said that it is perfectly normal for him to lash out at me or the children during an emotional outburst.It will be good for him to be able to release his tension by shouting or even crying. In fact we should encourage him to cry aloud or even for me to cry together with him. I usually remain calm outwardly but my heart bleeds inside. Life is so cruel to him.

Hospice Care

Norman had a fall on Monday, 12^th 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 18^th, 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.

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.

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)

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.

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

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.

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.

RFQMR

This morning we went to this clinic in Subang Perdana(Bodi Harmony) to check out their treatment protocol for cancer. Earlier I read about their treatment using RFQMR to treat brain tumor and arthritis at www.care-nexus.com. It sound promising and on further research this is what I found out.

RFQMR (Rotational Field Quantum Magnetic Resonance) could provide new hope for cancer patients.

Cytotron therapy with RFQMR technology is a non-invasive, safe and effective option to treat tumours by arresting cancer cell division leading to degeneration of the tumor.

Cytotron therapy is patented treatment for tissue regeneration and degeneration. For cancer it utilizes a totally different approach compared to conventional cancer treatment. Instead of the very high frequency ionising radiation used in radiotherapy, RFQMR uses radio or sub-radio frequency, low power, non-ionising, non thermal electromagnetic waves.

The main concern of the therapy is not the immediate destruction of the cancer cells, but rather with the help of the small amount of energy provided to the cell to stop the DNA’s uncontrolled mitosis, put the cell in a vegetative state and in time through apoptosis mechanism let the body get rid of the cancerous cells in a controlled fashion as all cells are programmed by nature for self destruction over time.

RFQMR can be an option for tumor treatment for patients who are unwilling or unable to have surgery, chemotherapy and radiotherapy or where these treatments have failed. RFQMR beams are precisely controlled and focused onto tissues to alter the proton spin inside and outside the cells therein generating streaming voltage potentials. This alters cell membrane potential to control cell mitosis.

Cytotron treatment is easy for the patient. Patient lies on the Cytotron bed that moves into the focus area and the treating rays are focused onto the affected point with the aid of laser guides and the patient’s MRI.

The computer calculates the dose based on the MRI report, gender, height and weight etc. Usually the treatment is given for 60 minutes daily for a period of 28 days. Most tumors should require a single treatment cycle but more may be required depending on the extent and aggressiveness of the tumor.

The treatment is non-invasive and patient feels no pain or discomfort due to the treatment. Patients can even listen to music or read during the treatment. For patients diagnosed with a tumor with or without previous surgery, chemo, or radiation, the RFQMR alters the Cell Membrane Potential to selectively arrest the cancer cell division and growth of tumor.

Each cell has a limited life span and is programmed by nature to die after completing that life span – hence the tumor cells whose growth has been arrested with RFQMR will die in due course of time. Death of cancer cells whose growth has been arrested by RFQMR leads to cancer free body. The same principle applies for patients with a recurrence/metastasis earlier untreated or previously treated by surgery, chemo, or radiation.

Even in advanced and terminally ill patients, the response leads to improvement in quality of life. For patients with a brain tumor (primary, recurrence, or metastasis) the response is often dramatic as the tumor shrinks leading to pressure relief. This is especially important as RFQMR is unaffected by the blood brain barrier and many available chemo drugs to treat brain tumors are not as effective as they cannot cross this blood brain barrierThe procedure is purely external with RFQMR rays requiring no Anesthesia, Blood transfusion, Hospital stay and is possible even in most patients who are unfit for anaesthesia, surgery, chemotherapy and radiotherapy. Cytotron therapy can be used to decrease the chance of metastasis.

We need to repeat another MRI on wednesday and will most probably start treatment on saturday. Norman will need 28 sessions of treatment over 28 days, special supplements and some form of electro magnectic waves stimulation on his right side. Total cost is about RM32,000.

We are very thankful that God has open this new door of renewed hope for us. Our spirit are lifted up again and we will not cease to pray for God's divine healing to be upon us. Father God, lay your hands us, keep us from harm and sufferings. Amen

Dorothy

Recurrent tumor

We had a brain scan done on the 25th February at sunway hospital. The report was not good. The tumor had grown bigger, 5.5 x 4.1 x 4.1 cm. We were devastated! The neurosurgeon could not offer anymore treatment now.
We saw Dr Ibrahim at Wijaya medical center and he suggest proton radiation therapy. This therapy is something like the normal radiotherapy. It directs highly precise beams of protons to kill the cancerous tumor. However, I went on to seek a second opinion from Dr Foo (oncologist from Subang Medical center) and she is not for it. It may not be effective at all since Norman already had 30 fractions of radiation therapy. Btw, the proton therapy is only available in Shan Don, Wanjie hospital in China. It takes 6 to 7 weeks to complete the therapy and cost about RM180,000! The other place that offers proton therapy is in Boston and the cost is double!
The other alternative is to start chemotherapy which could only temporary control the tumor growth. However we need to check the MGMT level of the tumor before we can start on chemo. This MGMT test can only be done in India!! The good Dr had make arrangment to courier the tumor specimen to India today and we need 1 week to get the results. This MGMT level will tell us wheather Norman is resistent to the chemo drugs.
I am so lost now. I need to make decisions fast and I feel so weary and burden.
If you all have any suggestions please write to me. Will blog again soon.
Dorothy

Stem Cell therapy at TTPH hospital. 3rd Jan 2010- 28th Jan 2010

Hi everybody,
Its been a long time since I last blog. I was not able to blog in Beijing as blogspot.com was restricted. Since we returned on the 28th, Jan I was busy, busy and busy! Here is a brief summary of the treatment done at TTPH, Beijing.

1. Daily IV herbal infusion. This is given to strengthen his immunity and it has anti cancer properties too.
2. Daily speech and physio therapy
3. Daily accupunture, monday to Friday. A few doses of nerve growth factor was given during the first week to stimulate nerve growth.
4. IV stem cells. 3 doses was given over 3 weeks
5. Stem cells via lumbar punture.
6. Herbal soup and oral herbal capsules (to regress brain tumor)

We are home for 3 weeks now. Norman is still weak on the right side. I am worried but try to console myself as it is only 3 weeks after treatment. We need more time to allow the neurons to heal. I need to push Norman harder on the physio part. He gets so frustrated when he could not use his right hand. Our next MRI is due next week on the 25th Feb. I dread all these scans because I dread bad news! I pray for inner strength from God to see me thru this hurdle again. Please pray for us.