Hyperthermia Treatment for Hepatitis C

This is a review of all the emails based on the hyperthermia treatment plus induction dosing followed by PEG-Intron A and Ribavirin for 52 weeks as told by Darlene Morrow. The clinical trial took place in Utecht, Holland and I live in North Vancouver , BC ,

Canada

The list is in reverse order with the newest addition being at the end. Hyperthermia Update May 1, 2005 is the latest addition.

week long physicians' conference put on by the Netherlands Liver Foundation (NLF). The NLF paid for a new department in the Utrecht Medical Centre (UMC) in Hepatology. They also have paid for a top notch hepatologist (Dr. Jan van Hattum) to head the department.

Dr. van Hattum gave a presentation of a small study where he had used a new technique for hyperthermia treatment for hepatitis C. They had 13 patients in the study all relapsers and genotype 1. Because the UMC specializes in Immunology there were able to track TNF alpha, IL2, 10 and 12, the T cells and a few more that I can't remember.

They did a single hyperthermia treatment and then noted that by week 6 ALL 13 showed a huge immune response. They had originally intended to do 15 individuals but the stasticians said that because the response was 100% there as no need to continue with the final two. They followed the hyperthermia treatment with IFN gamma.

All 13 had a huge improvement in QOL almost immediately. Unfortunately the virus did not go away and by the end of the 12 months most of the 13 were almost back where they started. However all of their viral loads were lower than pre-treatment levels.

I spoke to one of the patients and he said he'd do it again in a second – he felt almost normal for the first time in a long time. He couldn't believe the energy that came back. I guess we all know how it feels to lose it so getting it back must be unbelievably wonderful.

What made this hyperthermia treatment different was the use of technology. Previously they had heated the blood by immersing the patient in hot baths.

The problem with that was when the blood gets too hot you can fry the brain (among other things). They would immediately put the patients in cold baths to cool them off but the skin contracts on contact with the cold water and the inner core temperature stayed high. Dangerous to say the least and a good reason why it wasn't being used until now.

What they're doing now is removing the blood from the body at the groin, heating it in a big machine that can precisely keep the temperature at 41.5C and then it goes back in through the other side of the groin cooled back down. They keep the blood heated for 2 hr.

Day my sister asked if I had any questions and I jokingly said, "Would he take me on as a patient for the trial?" Well, Joan went right up to him after it was over. We also met the US Company representative who is funding the trial. The long and short of it is that they both said yes and by Tuesday I was sitting in the doc's office.

The trial is a single treatment of hyperthermia. You are in the operating room for six hours and then in the intensive care unit for two days. After that you spend about a week in the hospital being monitored.

6-58. They are doing all kind of immunology work and repeat PCRs (here the lower limit is 5 copies!) They are using 1.5 micrograms of PEG Intron A per week and 800mg of ribavirin per day for 6 months and then there is a dose reduction in the PEG Intron A until the end of drug therapy.

10 vials of blood removed, a ECG of the heart, a head and neck MRI, a lung X-Ray and an abdominal ultrasound. By the next Thursday I had an echocardiogram, a lung flow volume (exercise) test, and a stress test for the heart. Unbelievable, eh? A liver biopsy will be performed after I get some Dutch medical insurance (in case something goes wrong with the biopsy).

I have 4 possible problem areas- my ALT must be elevated to any degree, my white count must be above 3 and those old neutrophils have to be over 2.

Although my ALT was normal, my AST was elevated and they accepted that. And the ratio of the white count to the neutrophils is what they used and they will repeat the blood test after the immune boost that comes from the hyperthermia treatment. My white count now is only 2.3.

The last problem is the biggest. Patients don't have to pay for any drugs in the

Netherlands

. They are estimating that it will cost around €45,000 for the PEG Intron/RBV. Multiply by 1.57 to get Canadian dollars. Anyone with leftover ribavirin can send it my way. :-) As it stands I will have to take out a second mortgage. Don't think anyone has leftovers of that. :-)

With any luck we will have a Canadian in this trial and get some first hand information. There are only 10 people getting in so it's a big deal for all of us. And if they can get any headway with us hard to treat guys, it'll be a miracle. They are projecting that it will take 5-7 years to get this therapy approved for hepatitis C.

As with any clinical trial there are lots of places for problems so if you can all keep me in your prayers that would be great. I don't mind telling you I'm scared. And I have to be separated from my husband for the most part of 80 weeks. No pleasures at all.

I hope you all had a great New Year's Eve and wish everyone success in the coming year.

Just by way of a short intro I have had hepatitis C for a very long time. I am genotype 1a/b and my viral load is 12 million. I have had 9 months of interferon treatment without responding and then got involved in the clinical trials in 1998 with ribavirin and interferon. That was for one year. I responded but unfortunately relapsed. Then I went into another clinical trial with maintenance dosing interferon (just 1 million units 3 times a week. That lasted a year and was just to see it kept the AST down. It did but didn't do anything for the virus.

Over the time I have become increasingly ill. I developed a neuropathy or what is called small fibre polyneuropathy. The pain fibres are part of the small fibre group so I am in constant pain and typing is difficult so if I answer people briefly it is not because I don't care but only that each click of the keyboard costs me a lot. This email will also do that but I need to ask for help.

Canada

where I live in North Vancouver , BC I cannot be treated because my white count and neutrophils are too low. They tell me the neuropathy will only continue to worsen as it is caused by the hepatitis C. Therefore I am desperate.

I have family in Holland and I have been accepted as a candidate for a clinical trial using hyperthermia treatment followed by a year of PEG Intron and ribavirin. I wrote an article for the December hepc-bull if you would like to see the details of the trial. You can access that from www.hepcbc.com

Here is my problem. The clinical trial does not cover the cost of the drugs because all people in Holland get their drugs for free (wish it were so in

Canada

). The cost is 45,000 Euros and you multiply that by 1.59 to get Canadian dollars. We are desperate enough to take out a second mortgage on our home to pay for this. However I know that many people that have been on Ribavirin have to dose reduce at some part of their therapy and therefore have drugs leftover. I cannot thank the people that have sent me their leftovers enough!!! I am deeply touched by the communities' compassion.

I still need more ribavirin though. I have to take 5 pills per day plus 100mcg of PEG. If anyone has leftovers, I would be extremely grateful. The less money we have to go to the bank for the better.

So please keep me in your thoughts and pass the request on to your friends or anyone you know that might have extra ribavirin. I can send a Canadian address and am happy to pay for postage or whatever you think is fair.

I will be in Canada from January 13-Feb 12 to pick up the drugs I already have and to try to get some PEG whether it be from Canada (if they have things straightened out then) or from the US because it is cheaper even in the US.

Robyn picked me up at the airport and I went to her place in Breda . It was really tough to be at the hospital for the hyperthermia surgery the next day.

I arrived at the hospital and they had cancelled my surgery. My neutrophils were too low. I was so frustrated and tired. I spent the better part of the day at the hospital with testing and what not and then had to spend an hour and half on the train to Robyn’s. Took the bus to her place and got lost. Walking round and round and round. Just too tired.

Robyn was great- she took me back to The Hague the next day, shopping for groceries and made me a few meals. Joan is back in a few days.

Just a short msg from me - Dar's sister - to let you know this was THE big day and all is well.

As a matter of fact her blood values were already okay before I left the hospital - three hours after she was in ICU. This means she can come home tomorrow IF she is feeling okay. She was already talking although not too coherently when I left her. Dar had some discomfort from lying in one position for seven hours and being pushed and pulled into position for x-ray's and stuff. Hard to eliminate that though.

The procedure started around 9:30 and by 16:30 Dar was in the recovery room.
Dar was very closely monitored. Blood samples were taken every hour and she had 28 electrodes on her head to monitor her brain activity. She was quite the sight - and me without my video camera :-)

Darn - we could have had a good laugh about it later.............................

Anyway, feel free to send me an e-mail should there be any questions - providing I can answer them but then after Dar is home I can be her personal secretary so keep the cards and letters coming.

Please excuse the general content of this e-mail, I'm sure you all understand :-)

Darlene is home. Since a couple of hours. Still sleeping a lot. Darlene is not in any state to write or even dictate. Told me just to give you my impressions and perhaps you can put them in some kind of form suitable for the bulletin.

Darlene has never experienced this reaction to narcosis so perhaps all this sleeping is a side effect of the hyperthermia.

Her face and hands are visibly still very swollen. Fluid retention - drinking and peeing a lot. Like every hour. Also feeling the cold more than usual. Dar is in bed with two hot water bottles, a fleece blanket and two duvets. One feather and the other wool.

No blisters from were the electrodes were attached. And, thank goodness no muscle pain from being in one position too long. She had 28 electrodes on her head to warn doctors of epilepsy attacks and these were attached with glue so that the worst side effect was trying to get rid of the glue when she got home and finally showered :-)

Dar is feeling pretty lucky that she only has two contact spots from lying on the table (on her bum of all places).

Darlene will be closely monitored every Wednesday for twelve or thirteen weeks and then her checkups will become monthly. But she can fill you in on the protocol better when she is feeling better. see "part two"........... :-)

Have you any questions then let me know. I will be behind my computer for the next little while and can reply by return.

Thank everyone for the drugs they have sent cq are sending and more is needed, especially peg.interferon. (or is this not the medium she used to get the drugs?) Emphasis on having been kept cool and the expiry date - please.

Just wanted to add something personal my sister sent the day of the surgery. I wailed and wailed until they let me go home after 48 hours. But my blood values were all back to normal so they were just being very careful.

I haven't done much but sleep since then. I thought it was Thursday when we got home and was surprised to learn we'd lost a day. :-)

Lots of bruising and sores in the mouth from the tubes, I guess. It would have been scarier if my sister wasn't here.

Anyway I am sleeping away. 15 minute walks at the moment- today maybe a half hour. Feels good having you all for support. :-) Thanks for being there. If you hear of anyone that has PEG Intron A- think of me. :-)

As most of you will know I am in Holland undergoing a clinical treatment for genotype 1 relapsers. I have included your name on this list because of our previous contact. Should you wish to be removed please do not hesitate to let me know by return e-mail.

The trial involves a single hyperthermia treatment (which I had February 12th), followed in week six by 10 million units of IFN per day for six days, 5 million units per day for six days, and then high doses of pegylated interferon weekly until week 26 at which time the dosage is reduced to 'normal'. All of this is coupled with 1,000 mg of ribavirin per day.

I am very pleased because the hyperthermia treatment was uneventful. I was told to expect blisters and bruising and also the possibility of losing (some of) my hair. None of this happened. Because of my neuropathy I had asked them to move me periodically during the procedure which they did four times. This resulted in the absence of muscle pain which I had expected to experience.

The only notable side effect was the anaesthetics knocked me out completely for an extra 24 hours and on the third day I still was not able to function until later in the afternoon. I have had four operations and never had this reaction before. I spoke to another participant in the trial and she experienced the same side effect making me think it was due to the hyperthermia treatment. By the way, the hyperthermia treatment was seven hours in the O.R.

I have had two weekly checkups since being released. My platelet count doubled and is now normal at 150. My white count was up the first week and is now down to 3. My ALT was a real shocker. Previously it had been 40 and now is 230. I was totally dismayed but Dr van Hattum was delighted. He said this is what we were looking for - activity from the HepC. The next thing they expect to see is immune system activity in response to the HCV which should happen between week 4 and 8.

Starting on week 6 = March 26th, I will be taking the 10 million units and carrying on from there. I was unaware that I was going to be doing the induction therapy and I therefore NEED regular interferon DESPERATELY. If you or anyone you know has any unopened vials PLEASE get in touch with me by return e-mail. I have received four weeks of PEG Intron and still need a lot.

My dosage is 100 mcg. per week. I would be eternally grateful if anyone can help.

I have successfully received one parcel from the

here in Holland and also one parcel from the

shipped to

Canada

. I have one offer of PEG in Florida . Should there be any other offers from the

perhaps we can co-ordinate a mailing address and fly over to take delivery in person. One plane ticket return is much cheaper than having to pay for the meds privately.

At this point I would like to thank everyone from the bottom of my heart for their swift action and extreme kindness. Everyone has been so wonderful in responding that I have enough ribavirin with expiry date 2003 to last me until the end of this year. I still need two months worth with expiry date after February 2004.

I am feeling like my ALT is 230. I am experiencing HEAVY night sweats and extreme fatigue. Fortunately my sister has a washing machine and is taking good care of me.

I will be doing my next up-date after I start the interferon. Keep all the good vibes coming my way - I am going to need every one of them at 10 million units PER day.

Dr. van Hattum has told me that the two patients ahead of me that are already on the meds have gone viral undetectable by week 9 (two weeks after beginning the meds). Also, previous data has indicated that there could be a response rate as high as 70% in genotype 1's. Therefore this misery may be worth it all. That's why 'we' do it, right?

Hugs and prayers for everyone,

Dar

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Well I took my first shot of 10 million units on Sunday evening. It was also the first time I used the pen. I know it's supposed to be really easy to use but it took me forever to figure out especially with my hands shaking so much. I really didn't want to go there again.

However I did and even though I was prepared for those first evening shakes- I didn't know how bad they could get. My jaw was chattering so much I thought for sure I was going to break a tooth. Fortunately I have a mouth guard (for teeth grinding) and that worked really well. Also my sister got me a couple of hot water bottles and that slowed the shakes right down. :-)

So all in all, the shots aren't as bad as I feared. It's a little worse than 3 million but not 3 times as bad. :-) Except maybe the fatigue. Fortunately I can sleep.

I find the ribavirin more of a problem. I get migraines, nausea, and already I have sores in my mouth. I know we used to recommend something but I can't remember what. Talk about brain fog. Does anyone have any suggestions?

I know that I said I would e-mail after I stopped the high dose interferon therapy but it took too much out of me.

I am now in my second week of the once a week Pegylated interferon injections. It is going much better.

At the moment my white count is very low (1). We are hoping this is result of the high dosages and it will come up soon

Otherwise I will be taken off therapy until it normalizes and will be put back on half the dose. This is not preferable as it can allow the virus to mutate and escape treatment. The next couple of weeks should tell the story. Fortunately the Doctor is very up to date and willing to consider the whole picture and not just the white count.

I met him Wednesday and he gave me the good news I am an early responder to the treatment. That means the chance of success (the virus remaining undetectable and staying that way) is very high. Needless to say I am jumping for joy at this news. The last time I was on treatment it took me nine months to respond. Here’s hoping my white count behaves.

I am able to enjoy my daily walk but find that any additional activity can be difficult. Fortunately there is a library close by and I have been doing a lot of reading. I have also been able to visit my mum several times a week and talk with her on the phone which compensates for being away from ‘home’. My weekly checkups will change to monthly as of April 23^rd. so I have a flight booked on the 24^th to go home.

Needless to say I am looking forward to being at home if only for 18 days. I had hoped to be able to do some visiting when I am home, but I think it unlikely at this point.

Please change my e-mail address to: Darlene@watercolour-art.com as Canada.com is going to start charging for their services. This e-mail is being sent from Joan’s address and the quickest way to reach me in Holland .

In Holland I check my e-mails only twice a week and Joan is on the computer daily (hourly)....

If there is any news, I will be sure to let you know. Thanks again for all your good wishes and should I not have responded personally, sorry. I’m sure you all understand.

This clinical trial began with a 7 hour operation in which the entire body's blood volume was heated to 41.8C for a period of 4 hours. The trial's purpose is to test the machinery designed to heat the blood. Will the artificially induced fever cause the proteins in the immune system to fold correctly and thereby allow a proper response? Will retreating people with genotypes 1 that had responded to previous interferon/ribavirin drug therapy but then relapsed with PEG Intron/ribavirin further the percentage of sustained responses?

Six weeks following the hyperthermia surgery PEG Intron and ribavirin therapy began and dosage was based on weight. Drug treatment is for a duration of 52 weeks and began with induction dosing of 10million units of daily Intron A for 6 days and then 5 million units for 6 days. Ribavirin treatment began immediately and will continue at 1000mg per day for the 52 weeks of treatment. PEG Intron dosage is at 1.5 microgram/kg or 100micrograms per week.

2 weeks post treatment an early response was noted as defined by a decrease in viral load of at least 2 log values. 1 week later the virus was undetectable and remains so. The ALT is 11 and AST 27.

White blood cells (WBC) continue to be a problem. In

Canada

I was unable to qualify for treatment (assuming availability of PEG Intron) because the neutrophils were below 2. The neutrophils are a subset of the WBCs.

The debate with respect to cut off values for WBC in Holland differs from that in

Canada

. First of all both countries had originally used data gathered from chemotherapy patients to set the cut off values. The Dutch however, believe that the situations between cancer patients and hepatitis C patients are completely different. And data supports this in that while the drug treatment for HCV lowers WBC, the cells that remain are healthy functioning cells which is not the case with cancer. The data shows that there is no increase in infections in patients with low WBC up to a value of 1 for the WBC (of which the neutrophils must be around 0.43). At that point dose reduction is usually necessary. Naturally there will be exceptions.

There has been a wide variance in my WBC count from 1 to 3.7. The single time the count was 1 it was rechecked in 2 days. The WBC had increased to 2.4 in that short time so no reduction in medication was necessary. Weekly and now twice a month blood tests continue to show the WBCs bounce between 1.6 and 3.7. An appointment with a haematologist has been scheduled for August 1 to get a second opinion on the safety of the long term decrease in WBC. Plus an additional liver biopsy and ultrasound will be done July 31 as per the study protocol.

The other area of concern is the reduction in haemoglobin due to the high dosage of ribavirin. These values have varied between 5.3 and 7.2 (normal would be between 7 and 9 for a female). The most notable side effects are (to a high degree of both) fatigue and sleepiness plus shortness of breath on climbing stairs etc. Regular activity can be quite difficult as the fatigue can come out of nowhere. Short term memory loss and some mental confusion can occur when the fatigue gets too bad. The haematologist will assess the reduction on haemoglobin as well.

In addition I have found that there has been no increase in my neuropathy problems. This issue was debated in

Canada

and several neurologists could not agree on whether or not they thought the PEG Intron would worsen the existing neuropathic condition (small fibre polyneuropathy). This was used as another reason to exclude me from treatment. The neuropathy was particularly debilitating and the final neurologist that I saw believed that the hepatitis C virus was responsible for the condition and it would only worsen if the HCV went untreated. This was my chief concern and because of the significant decrease in QOL I was willing to undergo extreme measures.

I must say that the treatment has been very difficult. Two notable differences between the regular interferon and the pegylated form were the absence of an increase in neurological problems with the PEG and the number of times I have had a fever (which never happened on the regular interferon). I don't know if this is due to the drugs, the low white count, the hyperthermia treatment or a combination of all three. In any case the fever has never been higher that 39C.

I have also had significant problems with dry mouth, cold sores and sores inside the mouth. This has limited what I can eat and is very unpleasant. I am concerned about the extent of the dry mouth and worry about losing teeth. I just recently began using the Biotene system and have found some relief from that. Despite the mouth problems and the nausea I have managed to maintain my weight.

My appointments switch to once every 3 months beginning mid October. I am hoping that I can come back to

Canada

in between the next year's appointments. I sincerely miss all my friends, my husband and

Canada

–not necessarily in that order :-)

Wishing everyone success and I hope that people are able to enjoy the summer months. Think of me when you are walking the seawall, looking at the mountains or hiking. :-)

Just a short update. I also wanted to apologize for the last one- it was an article for a newsletter. I had sent it to Joan's computer by email and had wanted to personalize only Joan didn't realize that and sent it off before I had the chance.

I have not had any news about the liver biopsy or ultrasound. I should hear by September but I don't expect there to be any startling news.

The good news is I can stay in the study. Week 26 they looked over everyone and if you hadn't met certain criteria, you were excluded. 2 out of the 10 are gone.

My bone marrow biopsy was not so good. They found a haematological disease. In 1994 before I had any treatments I had a bone marrow biopsy done because my white count, red count and platelets were low. At that time they found no iron stores in the marrow but also no conclusion as to why. So it was just left.

This time they found a reason. It is "possible" the disease is caused by the drug treatment and if that is so then when I stop taking the medication, it will go away. However because of the earlier biopsy (and other reasons) they felt it necessary for me to realize that this disease is a real possibility. If that is the case, it must be monitored closely as it can become aggressive quickly. I believe they are looking at Myelodysplatic Syndrome (MDS) or Aplastic Anaemia.

So two months after the treatment stops (May 2004) I am scheduled for a repeat biopsy. Hopefully it will be normal or.... I prefer to think of the positive as there will be plenty of time to deal with the negative if and when it happens.

Bill is here for 3 weeks so I am having a wonderful time no matter how I feel. :-) We are doing some fun stuff and taking my mind off how things are going. In the third week of September the PEG Intron is reduced by 1/3 and hopefully that will mean fewer side effects.

October 9 I can go home to

Canada

until Dec 29 which is my next appointment. :-) I can't wait to touch Canadian ground again. :-)

Initially the hospital intended to do a PCR on the liver biopsy tissue. Unfortunately this has been delayed or cancelled due to lack of funding. The results of the biopsy were: no significant change from the previous one - six months ago. However there were still signs of inflammation which could be from viral activity.

The PCR from the blood was still viral undetectable but they are using a test that has a lower limit of 600 copies. They are saving the tests with the lower limit of 50 copies for the end testing in September 2004.

The haematology results from the genetic testing should be available in the next few weeks.

Apart from this I have been ill, very nauseated and actually following this through with action. The problems with my mouth increased, an infection developed making eating a hardship. I have been subsisting on 'meal replacement' shakes. Despite my efforts to the contrary I have lost two and a half pounds.

In September the Dutch legalized medicinal marijuana. My doctor has prescribed this for me and we are waiting to see if it is really effective. I have had one really good night with no side effects but then when I increased the dosage I was having more nausea. I am also on a course of antibiotics for an infection which has nausea as a side effect as does the ribavirin - so ......... ?

My peg interferon will be reduced by one third on September 26th so hopefully the side effects as well.

I will be coming back to Vancouver in October and staying home for three months. Needless to say, Bill and I are over the moon about that. The clinical trial continues until September 2004 with checkups every twelve weeks. Depending on how difficult I find the travel I intend to fly back and forth for those appointments.

I tried the marijuana but it was making me ill. At least I think it was that. The drugs for my mouth are certainly making me throw up and the marijuana isn’t helping. I may try it again later.

I have been on smoothies and soft food since the end of August because of the problems with my mouth. They are due to the continued low white count…

TOP

Well I was really lucky on the flight home. There were lots of empty seats and they gave me a whole row of 3 to stretch out on and take it easy. I managed to sleep and wasn’t “broken” when I got home.

I decided to get second opinions on what was happening. I had a bone marrow biopsy and they found Myelodysplatic Syndrome or bone marrow failure. It is the kind that makes too few cells. Hopefully this is a part of the side effects and will go away when I stop treatment.

The liver specialist didn’t want me to go down to 65 micrograms of interferon/week but to stay at 100. I’ll try.

I went to see an oral specialist and she is working at getting my mouth problems under control. It seems to working! I can’t believe how quickly I can be out of pain. I have been drinking shakes and smoothies for months.

I have been really sick and tired. Not much to say otherwise.

TOP

I am not able to take the 100micrograms of interferon. My white count keeps dropping so that I have to stop the treatment for a week. I am trying to do it once a month and taking 80 micrograms the rest of the time.

I had my fiftieth birthday today!! I just refused to give in to the fatigue and all. Bill had organized a wonderful surprise for me and had all kinds of birthday cards and messages from people. It was wonderful. J

Terry and Melody had our lawn plastered with pink flamingos and old buzzards as a present- it was great!

We had a super day and ended it with dinner at the Cannery- we haven’t been there in years. It was wonderful. I even had a glass of wine.

Flew to Holland . I was really wiped out. The flight was late and I almost missed my connection. Plus I was up for over 30 hours. Awful. Mom and Joan were at the airport but I was too tired to even talk with them.

Recovered a bit over the next few days. Had appointments and bloodwork at Utrecht . Everything is going well. I am back in the study…. Seems that two companies are fighting for the right to fund it. I wonder if we will ever really know what is going on.

Had a great birthday dinner with Mom and Joan. Lots of fun. Also had another glass of wine. J Joan gave me a wonderful digital camera for my birthday and Mom gave me a fantastic watch. And I got flowers from both of them J Nothing like flowers to cheer you up.

Otherwise, I just got sicker and sicker in Holland . Seem to have picked up something extra…

January 19, 2004

I flew back home and got lucky with seating again. I had 3 seats to stretch out on. What a difference it makes. I wasn’t quite so tired when I got home.

Things progressed as normal otherwise. I was sick for about 3 weeks and can’t seem to get back to normal.

I saw the haematologist again and she is sure that my problems are not the result of the treatment. We went through my list of questions and she had answers for everything. The best that she could give me was that the treatment could be aggravating the condition but not causing it. She did however agree to do a second bone marrow biopsy to confirm the diagnosis after I have stopped treatment and had a chance to recover.

TOP

I am feeling a little better but have had to stop the interferon again. The neutrophils have been at 0.5 or 0.6 for quite some time. I am getting worried. Plus the haemoglobin is really low.

I am switching to the prescribed 65micrograms of interferon in hopes that that will alleviate the problems.

Well, I had a transfusion today. The haemoglobin is just too low and I am so tired of being tired. The haematologist wants to put me on neupogen to increase my neutrophils. It is very expensive and we are trying to get it through the Cancer Agency. Changing doses doesn’t seem to have helped.

Just a quick update. I have taken my lost shot of interferon and swallowed my final ribavirin capsule. Yippee!!!

I have been on treatment since March 23, 2003 . In that time I had to stop the interferon a number of times particularly during the last 6 weeks ( I had to stop every two weeks because my white count and hemoglobin were too low). I had seen the liver specialist here who told me that I had to take the doses that I had missed. Unfortunately I couldn't make the last two. I even went as far as to have a transfusion to get the hemoglobin up and have been taking shots to get my white count up (at $400/week). It worked but my bloodwork still showed signs of a new infection setting in and I was so sick/weak from it all that I had to call it quits.

That makes 54 weeks of treatment on ribavirin and 50 weeks on the interferon. Standard procedure here is 48 weeks so I figure I am still ahead of the game. :-)

I just wanted to thank everyone for their continued support. It has been unbelievably difficult and everyone has been so kind and patient. I am sure it will take awhile to feel better but at least I can start the road to recovery. The virus is still not detectable and the real test will come at 6 months off the medication and again at 1 and 2 years. If I am undetectable at 6 months, the odds are 95% that I will remain undetectable for 5 years. If I am still undetectable at 1 year, the odds are 98% for a cure and at 2 years the odds are 99.9%. Assuming they know what they are talking about.

A special thanks to Doris for all her help and a huge hug for Vic for remaining undetectable!! I am so happy for the both of you.

Also thanks to all who helped out with meds. The outpouring from the community was very touching. People that I never talked to or had met were willing to go out of their way to help me. Thanks to Wendy for putting my message out there. You all know I couldn’t have done it without you.

I see the docs in Holland in June and then again in September. And then that is it. J

And thanks to Smilin' Sandi for her moral support and help whenever she could. And the Dars for all the emails. :-)

And most of all thanks to my big sister, Joan. She managed over me when I was at my worst and sent out emails, letters and made a million phone calls on my behalf. To say nothing of sharing her house with me for so long. And catering to the whims of a grouchy, sick person. :-) But most of all for the hugs and love.

I have been diagnosed with Myelodysplatic syndrome which is a bone marrow failure disease. Hopefully this was aggravated by the treatment and otherwise will be benign. A repeat bone marrow biopsy will tell the prognosis but I think I need to wait a year to give the marrow and whole body a chance to heal.

I can hardly wait to have my life back again. Wow!! The sun is shining today and that's good sign.

I am off to Europe for 3 months mid May to the end of August. The email address below will find me anywhere. :-)

Well it has been an interesting few months. I felt absolutely fantastic for about 4 weeks. I am like a "normal" person!! I couldn't believe it. While we were in Venice and Paris, I was at the top of my game enjoying being a tourist just like everyone else. You can imagine how that felt.

Unfortunately it didn't last and while I am not doing as well - the fatigue and pain are back - I am still doing a lot better than I was before I started the therapy. The doctors did say it would take from 3-6 months to get over the effects of the treatment but I got fooled when I felt so good right away. Actually it was really depressing when I starting to feel the pain and fatigue again <heavy sigh>. But I am getting over the depression and hoping for the best.

My blood work is doing okay. My white count is up to 3 so that is super. On July 21 I will have another bone marrow biopsy done to re-evaluate the possibility of MDS. I am really hopeful that it will be okay since the blood work is so good.

I am getting the first results from my 2 month post treatment viral load on August 10 and they will do a repeat one on August 30. So keep your fingers crossed for me. :-)

I am here in Holland until the end of August and then I'll be back in Canada again. I hope everyone is enjoying the summer!

I’ll start with a quick recap. I have/had genotype 1a/b hepatitis C and was terribly ill for 12 years. I am 50 years old, had to quit working because of the pain and fatigue, have/had small fiber polyneuropathy which is extremely painful and had been on 9 months of interferon only treatment, followed immediately by 12 months of Ribavirin and interferon where I relapsed in two months, which was followed by 12 months of low dose maintenance interferon. My neutrophil count was below two and I could not receive treatment in Canada. My neuropathy kept getting worse (which they blamed on the hepc) and I did not know what to do. My quality of life was terrible.

While visiting family in Holland, I went to a Hepatitis C Patient Information Day where I saw a presentation on the use of hyperthermia (raising the blood temperature to 41.8 C for over 2 hours). My sister and I spoke with the physician in charge of the study and he was starting a new one and accepted me as a potential patient. After rigorous testing, I was accepted into the study and spent the next 82 weeks in Holland with short trips home. Cost was a huge issue and it was through the hepatitis C community that I received many of my drugs. These drugs were from people that could not continue treatment. They all kindly shipped them to me in Holland and here in Canada. So everyone played a big part in this. I will never be able to thank those involved enough.

This is almost the last report I need to write. There will be two more one after my six-month viral load and the second after the year. I have now had my 4 month viral load test results and I am very happy (understatement) to tell everyone that I am still UNDETECTABLE!! I spoke with Dr. Farley at our last meeting and he mentioned that with type 1 genotypes those that are undetectable 3 months post treatment tend to remain undetectable. So I have let out a little of the breath that I am holding until this is all over.

I have to report that I feel fantastic! It is truly unbelievable. I feel “normal.” I didn’t think that would ever happen again.

The first month after treatment stopped, I felt good but then I slid down. The leftover affects of the treatment were really awful. My memory was gone, I was tired, my hair was falling out again albeit slowly, the problems with my mouth flared up and in general, I didn’t feel well. However I was on Neupogen to bring the bone marrow back up (the white counts were very low especially the neutrophils). In addition, every time I took an injection (about every 3-4 weeks) I would feel great. I cannot believe that my neuropathy would go away. Not just diminish but also go away. I am typing this myself. J Before typing a sentence would cause me pain that would last for weeks.

The effects from the Neupogen didn’t last. After about 2 ½ weeks the pain would slowly return and so would the fatigue. However, I would get another shot and they went away again! It is like a new lease on life.

They told me that the neuropathy was due to the hepatitis C and the fact that is going away is good evidence in support of that. I need fewer and fewer shots of Neupogen now, which encourages me to believe that I will not need them for much longer. I speculate that perhaps the shots are helping to keep the viral load undetectable in this critical period. Perhaps the Neupogen is boosting my own immune system to take care of any “flare up” of quasi species. Now that is my own theory so you can’t repeat. LOL. After all, what do I know... I am just a patient.

There is one more fantastic item of news to share with you. They diagnosed me with myelodysplastic syndrome when I was on the treatment. The bone marrow biopsy showed many dysfunctional shaped cells and a lack of two cell lines. The prognosis wasn’t good. When I was off the treatment for 3 months, I had a repeat bone marrow biopsy done in Holland. There were absolutely no signs of any problems! Yippee. It isn’t often that someone on treatment has a bone marrow biopsy so I think that we have just discovered a rare side effect of the medication to add to the existing long list. The doctors couldn’t believe how normal the bone marrow was. Of course, they want to do a repeat biopsy in 6 months to be absolutely sure but it looks like the effects of the therapy were reversible. Whew and double whew. I am so happy.

I feel like I have a new lease on life. I want so much to share that with everyone. Was it the hyperthermia treatment, the induction dosing in the beginning, the weight related dosing of the PEG interferon, the high doses of Ribavirin or was it a combination of all of the above. They will need to do more studies to find the answers.

So in short, my hair has grown back, my nails which I couldn’t grow for several years are now long enough to interfere with typing J. My memory is improving, my skin is not as thin, the neuropathy is almost gone and my energy is super.

Unfortunately, the problems with my mouth have not gone away. I continue to have to use dexamethasone mouthwash once a day and periodically lozenges for oral thrush. The dry mouth caused by the therapy lead to significant gum recession (1 mm at the canines). That’s a pill because now I need a skin graft from the roof of the mouth to replace the lost tissue or the dentist says that the recession will now progress rapidly due to the loss of one layer of tissue. Since I don’t want to lose my teeth, I don’t see that I have a choice.

I have the whole journey of this treatment online at www.hepcvsg.org/hyperthermia.htm There is something like 18 pages of a journal of what I experienced to share with you. I will also try to find out if there are more local trials going on. I know that a Japanese company called Kirin Brewery (not the beer makers J ) has discovered a compound from the ocean called KRN74 (some form of algae) that mimics the effects of the hyperthermia surgery and they are doing studies now. This is an excerpt from the partner company’s website http://www.argostherapeutics.com/test/news_merixkirin.html : “Dendritic Cell Therapy in Infectious Diseases

Chronic viral infections are difficult to treat and are often incurable. Such infections may be treatable with dendritic cell therapy. Dendritic cells may be transfected with viral RNA or antigens to mount an amplified immune response. MERIX is exploring the potential role of its dendritic cell technology for viral infections caused by human immunodeficiency virus and hepatitis C virus.”

I wish with all my heart that everyone infected with hepatitis C could have the luxury of feeling normal again. If wishes were reality, we would all be “cured.” I hold you all in my prayers. Without your support and kindness, I could not have made it through this long and arduous journey.

I am very happy to report that my six month PCR was undetectable. I am over the moon! This means that the chances are in the high 90%'s that I will remain hepc undetectable for two years. At that time I will have a repeat PCR done and if I am negative then, you can pretty much say I am going to stay that way. WOW! THis is such incredible news. The treatment was awful but this makes everything worthwhile.

I am feeling much better. I have been focussing on regaining my health. I go to Yoga 5 times a week, Pilates once a week, Ball aerobics once a week and cardio on the treadmill and bike for one hour a day. In the last 6 months I have gained 1 inch in muscle on my chest, and lost an inch of both my abdomen and hips. I am up at 6.00 every morning and go to bed around 20.00 to relax before lights out at 21.30. Everything is slowly coming together. I wish everyone could experience this and pray that in time, you all will. Next report in a couple of months to see if things are still going so well. :-)

I just wanted to let everyone know that I am still doing SUPER!! I am still going to the gym and doing my yoga, pilates, cardio and my weight training. I am still progressing ie adding muscle mass and strength.

I am still taking Neupogen injections although now it is for the neuropathy. For a reason that remains unknown, a side effect of the Neupogen is that the neuropathy temporarily goes away. I have been to the Pain Clinic at St. Paul's and they are stumped by this as well. They are pleased to see the result and I have another appointment in March to make sure that this is a true result. But I have to say it has been going on since April 2004. I take the shot and after a few days the neuropathy goes away. It doesn't just get better - it actually goes away! I can't believe it. I have had this problem since 1998. Unfortunately it does return but the time between shots is growing. I am now at shots once per month. And the hematologist cannot see a problem with taking the shots once a month. It's too bad they are $200 per shot but pain free....

I am scheduled for the oral surgery on the bottom jaw February 10. I changed the date from January cuz I just didn't want to go through another liquid only couple of weeks. I'll update everyone after that.

I recently heard that the US is doing a larger study with the hyperthermia. First Circle Medical is the company that makes the machine. If anyone is interested, I would check with them or with NIH. Let me know if you have some info and I'll post it.

I just wanted to write a quick update. I am still feeling fine. Glory be!!! I can't believe it. I have taken 2 semesters of French and am enrolled in a third one. I am also doing a course to become a Personal Trainer. AND in May I'm taking certification in STOTT'S Pilates Mats Plus. I'm finally doing what I really love. My memory was so bad before there was no way I could do any of this. And after September I am going to take my yoga certification. :-) So, you see, I really am doing okay. From 3/4's dead to this. :-) I really am blessed.

But what I really want is all of you to pray for me. Tomorrow I go for my one year PCR test. If I am still undetectable, then there really is hope. I am so nervous. I won't hear until May 4 when I see the doctor. I can use all the prayers I can get.

And thanks to all the people that write to find out how I'm doing and to wish me well. You have no idea how much that means to me. I pray everyday for all of you. The dragon can be slayed.

I don't have a lot of time right this moment (I am studying for an exam!) but I just had to share the GREAT news! My one year PCR HCV is undetectable!!!!

I feel great. I have decided to change careers from Teaching English as a Second Language. I am studying for an exam on Tuesday to become a Personal Trainer Specialist! And on May 5 I start my Pilates certification. In September I will also get my yoga certification!!! I can't believe it's all possible. When I was so sick, I couldn't concentrate long enough to read for pleasure. I was in the midst of my Master's Degree when I realized I couldn't possibly keep it up. I was just too sick. And here I am 13 years later revving up to go!!

So we all have to believe. It can be done. The dragon is not the master- WE are. Never, never give up.

Well, I'm still undetectable and going strong. I count my blessing everyday. The last test had a lower limit of 10 so it's looking good and gone.

And I found another woman that went through the trials in the US at the same time that I did. She's undetectable too! Wow- We could hardly believe we found each other. Her name is Vicki and she's from Atlanta, Georgia. She has given me her permission to post her email in case any of you want to contact her. It's hammond205@aol.com