Welcome to the   

Janos Czipri

 Website

I have been diagnosed with Follicular non-Hodgkin's Lymphoma, which is an incurable type of cancer.

In March 2001, I went to the doctors with a pain in my back. I saw four different ones in the same practice over the next 6 months. One thought it might be a recurrence of an old injury, told me to take some pain killers, and it would go away. Another one said it was muscular, and that I should have Physiotherapy. Which I did, but it didn't do any good! After a few weeks the pain was so bad that I couldn't sleep. The Physiotherapist suggested acupuncture, she warned that acupuncture is not a cure, but might relieve the pain. I said please, please go ahead and stop the pain, I'd give anything for a good night's sleep! After a couple of sessions, the pain went, and I thought that was the end of it.

However, a few months later the pain returned. I saw yet another doctor, who sent me for more Physio and more acupuncture, but this time, it didn't help. By now the pain was so bad, I couldn't even lie down, let alone sleep!

Back to the doctors, this time I saw the most junior one in the practice, who actually examined me! He said "did you know that you have a lump in your stomach?", I said no, I didn't. So he showed me how to feel for it, by lying down, and gently pressing all around my abdomen. There it was, the lump felt huge, how could I not have noticed it before?

The doctor said that I should have some tests, but there was a 6 week waiting list for ultrasound scans, that is if I went under the National Health Service scheme. Luckily I had a private health insurance with BUPA, through my work. So, I could see a specialist the following day! After 3 scans (ultrasound, X-ray & CT) and 2 biopsies (abdominal & bone marrow) they announced that I had a type of cancer: Indolent, Follicular, Non-Hodgkin's Lymphoma, Stage IIIb. Which meant that I had several tumours, some above and some below the diaphragm. The pain was caused by one of them, pressing on a nerve. They started me on Chemotherapy straight away, and the pain disappeared within 2 days.

The oncologist looking after me, said that I must have set a new record, for it took only 10 days from referral by my GP, to the 1st Chemotherapy, including all the tests mentioned before. He also said that the tumours must have been growing for several years, to grow so large (18cm x 10cm x 10cm)

 

(Aug 2001) The Chemo regime I had, is known by the acronym CNOP, it consists of four drugs:

C = Cyclophosphamide,
N = Novatrone (Mitoxantrone)
O = Oncovin (Vincristine)
P = Prednisone (Prednisolone)

These were applied intravenously once every three weeks. I had 6 sessions of CNOP, but luckily I didn't suffer from any of the usual side effects, nausea, fatigue, etc. I even managed to keep all my hair, what little there was of it.

(Jan 2001) After the Chemo was finished, I had another CT scan. This showed that the tumours had reduced to about half their original size. The oncologist suggested that we should use a new type of drug, called Rituxan, to try to reduce them even further.

Rituxan

Rituxan is a monoclonal antibody therapy, also known as MabThera and it works by attaching to proteins which are on the surface of the lymphoma cells. This makes it easier for the immune system to find the lymphoma cells and destroy them. Rituxan too, is administered as an intravenous infusion (IV). It was given once weekly, for four weeks. Again, I was lucky, as I had none of the adverse reactions that can happen with it.

(Jan 2002) However, the CT scan was still showing up tumours, so the next step was Radiotherapy.

Radiotherapy

(Feb-Mar 2002) I have had 15 daily sessions of 2 Gy radiation, I can't grumble, for as the specialist said "the more we can reduce the tumours, the longer the remission is likely to be".

Remission

A month after the Radiotherapy finished, I had another scan which showed that there were still some small lumps, but the specialist said, that they were probably just "scar tissues". So he said that I was in "Remission"

The Beast is Back!

(Jun 2003) I am sorry to have to say, the pain in my back has returned, no sleep at nights, again! The first thing I did (after 3 weeks of hoping that it would go away), was to go back to the oncologist, who did all the usual tests and said that it was NOT the lymphoma returning, more likely it?s a kidney, or a gall-bladder stone. I had an ultrasound scan, which didn?t show up anything.

After another week of sleeplessness and pain, I went to see my GP, who was going to send me for some more tests, but warned me, that there was a 6-week waiting list if I went through the NHS. Instead she sent me back to my specialist, who said that I needed a CT scan, which I had the following day, and had the results only 3 days later. Guess what, the beast is back, but because this time it?s in my chest, he couldn?t feel it when he examined me. The new lump was in the chest cavity and pressing on the Aorta, causing the pain, which is worse when I try to lie down. The upshot of it is, that I have to go back for more Chemotherapy, starting next Tuesday and every 3 weeks after that.

(Jul-Sep 2003) This time it was CHOP + Rituxan combined, it takes at least 5 hours to administer! Still, if it works as fast as before, I shan?t complain.

After the first sessions the pain did go away, but not so quickly as before. Also, this time my hair has started to fall out, it was about 3 weeks after the first Chemo, when I noticed it. Luckily there wasn't much of it to start with.

Following the 4th session of CHOP+R, there was a 3 week wait, followed by yet another CT-scan.

Back in Remission !!!

(Oct 2003) I had the results of my latest CT-Scan and my Oncologist informed me, that I'm back in Remission! - Hip Hip Hooray -

The first remission lasted only 15 months, but now I was hoping for a much longer one, though I'm realistic enough to know, that it might not happen. On the other hand, they are bringing out more and more new types of treatments, so even a few extra months gained, means getting a new drug or a vaccine that could give me an even longer period of NED! (No Evidence of Disease).

It's Back Again !!!

(Apr 2004) A lot has happened since my last entry, not least, that I've had my routine 3 monthly check ups. The first one in January was OK, however before the second was due, I began experiencing the same pains as I had before. A nagging back ache that gets worse when I lie down. It got so bad that I had to get up after a couple of hours. As I already had an appointment with the Oncologist in a few days time, I just put up with it.

When I had the examination he found some lumps in my abdomen and immediately made an appointment for me to have a Bone Marrow Biopsy and another CT scan. The results showed that my lymphoma had returned

As the first remission lasted only 15 months instead of the expected 3-5 years, and the second one only 6 months, there would be little point in having any more of the same type of Chemotherapy. The best alternatives that I know about, would be the Monoclonal Antibodies with a Radio-Isotope attached ie Zevalin or Bexxar. However these have not been approved in the UK. Not very nice of NICE (National Institute of Clinical Excellence) the people who make the recommendations.

So the next obvious choice was SCT (Stem Cell Transplant)

Autologous Peripheral Stem Cell Transplant

For the benefit of those amongst us, who know about as much about A-SCT, as I did, here is a brief explanation ...

Peripheral Stem cells are immature cells circulating in the blood, these cell can turn them selves into red-blood cells, white-blood cells or platelets, as needed by your body.

Autologous Stem Cell Transplant involves taking your own stem cells from your blood and re-injecting them back after all the cancerous cells have been killed by a very high dose of chemo, and when required, by total body irradiation

The other type of Stem Cell Transplant, is called Allogeneic, which is when the cells come from a donor.

(May 2004) I have been admitted into Nottingham City Hospital in preparation for an Auto-SCT. I have had my Hickman line inserted under local anaesthetic and have started IVE Chemotherapy. This goes on for 4 days non-stop, and then they give you Granulocyte-Colony Stimulating Factor injections for 5 days.

The plan is to harvest something like 5 million of my stem cells per kilogram bodyweight, in my case, that means 160 million cells. Due to previous treatments (2 courses of Chemos + 15 Rads), which destroys cells, this might mean having several goes at it.

IVE 1

The IVE went well, no sickness or nausea, just a bit of light headedness. It just took sooo very long, I was on the IV machine for 72 hours non-stop!

On top of the fluids being pumped into me, I also had to drink gallons of water, literally. They also want to know my fluid balance, so they had to measure every drop going in and coming out.

I had more Granulocyte-Colony Stimulating Factor injections, at 300 micrograms/day for 5 days. They do daily blood checks until there were enough Stem Cells floating about and then they could harvest them.

For those interested IVE chemotherapy consists of:

Day 1.
50 mgm/sq.m Epirubicin in 100ml saline over 10 mins.
200 mgm/sq.m Eptoposide in 1000ml saline over 2Hrs.
1.8 gm/sq.m Mesna in 100ml saline over 10 mins.
3.0 gm/sq.m Ifosamide in 1000ml saline over 22Hrs.
5.4 gm/sq.m Mesna in with the Ifosamide

Days 2 & 3.
200 mgm/sq.m Eptoposide in 1000ml saline over 2Hrs.
2.2 gm/sq.m Ifosamide in 1000ml saline over 22Hrs.(70% of Normal Dose)
2.2 gm/sq.m Mesna in with the Ifosamide(70% of Normal Dose)

Day 5.
4.0 gm/sq.m Mesna in 1000ml saline over 12Hrs

Other drugs in tablet or capsule form:
250 mgm Ciprofloxacin 2x daily.
50 mgm Fluconazole 1x daily.
200 mgm Aciclovir 4x daily.
1 mgm Granisetron 2x daily.
2 mgm Dexamethasone 2x daily.
300 mgm Allopurinol 1x @ night.
300 mgm Phenytoin 1x @ night.

Set-backs and Progress

(May 2004) After a few days at home I had to return to hospital for more blood tests, to see if my White blood cell counts have reached a minimum level of 1.0 before they can start Stem Cell collection. In the meanwhile I had to give myself daily injections of 300 MU Neupogen, which is a Granulocyte-Colony Stimulating Factor, it helps to mobilise the Stem Cells.

Another three days later, the White blood cell counts suddenly went up to 4.6 and we could go ahead with the Stem Cell harvest. They take blood from one arm of the Hickman line, pass it through a centrifuge, which separates the blood into various layers, it collects the Stem Cells and returns the rest back through the other arm of the Hickman line. It took about 4 hours, but we managed to collect 9 million Stem Cells per Kg body weight, a total of 720 Million Stem Cells! These are then frozen and ready for the transplant. I must say I was very pleased, as some people have to return time and again to get the 5M/Kg, which is the minimum they like to go with.

I went to see my Haematologist, Dr Andy Haynes, to find out the next plan of action. I am to have another IVE, to reduce the tumour burden even further. Then a CT-scan to make sure that we achieved a minimum of 50% reduction. If not, then I am in for a third IVE, if yes, then comes BEAM, which is the high dose chemo, to kill all the blood cells, followed by the actual transplant.


IVE 2

(Jun 2004) It was all going so well! I was to have the second IVE, as soon as there was a hospital bed available. In the meantime, my Hickman Line needed a clean out, but as the nurse was doing the last flush, the line started to leak, a spurt going right up in the air, we sprung a leak. The doctor on duty said that I would need a new Hickman Line putting in. So without much ado, he proceeded to give me a local anaesthetic and pulled the line out. I never felt a thing. The same day they put in my brand new Hickman Line, on the other side, ready for my second IVE starting the next day.

The chemo was much the same as before, just this time I had the hiccups and some tummy ache, it wasn?t until I got home that the stomach cramps started, still I was only sick twice in the night.

I have got my appointment for the CT-scan for next week, and I am seeing the specialist the week after. I am just hoping that I won?t need a third IVE, just the BEAM chemo, followed by the actual Stem Cell Transplant. It would still mean another 2 months, minimum before I could return to work.

For those interested the second IVE chemotherapy was:

Day 1.
No Epirubicin! (I've reached my lifetime limit of Anthracycline drugs)
200 mgm/sq.m Etoposide in 1000 ml saline over 2Hrs.
1.8 gm/sq.m Mesna in 100ml saline over 10 mins.
3.0 gm/sq.m Ifosamide in 1000 ml saline over 22Hrs.
5.4 gm/sq.m Mesna together with the Ifosamide

Days 2 & 3.
200 mgm/sq.m Etoposide in 1000 ml saline over 2Hrs.
1.8 gm/sq.m Mesna in 100ml saline over 10 mins.
3.0 gm/sq.m Ifosamide in 1000 ml saline over 22Hrs.
3.0 gm/sq.m Mesna together with the Ifosamide

Day 4.
4.0 gm/sq.m Mesna in 1000 ml saline over 12Hrs

Other drugs in tablet or capsule form, some for up to 2 weeks after the chemo:

Co-trimoxazole 2x 960 mgm twice a week
Colistin 1.5 mgm 3x daily
Ciprofloxacin 250 mgm 2x daily.
Itraconazole 100 mgm 2x daily.
Aciclovir 200 mgm 4x daily.
Granisteron 1 mgm 2x daily.
Dexamethasone 2 mgm 2x daily.
Allopurinol 300 mgm 1x @ night, for 2 nights
Phenytoin 300 mgm 1x @ night, for 1 night.

GOOD NEWS !

The CT-scans show that the tumours have shrunk by more than 50%, so I don?t have to have a third IVE. Hurrah !!! As soon as there is a bed available they are going to give me the high dose chemo, BEAM, which takes about 4 days, followed by the return of my stem cells. I will probably have to have 1 week in isolation, before being allowed home. They usually recommend 3 months of rest before returning to work. The immune system needs that long to  recover. The last thing I would want is to catch something nasty!

---

The tumours have spread to my lungs!

(January 2005) have finished the course of 10x 2 Grey Radiotherapy and 2 weeks later had another CT-scan. The results of which show that the tumours have spread to my lungs and there are visible lumps in my neck as well. The Onc said that because my blood counts are also low, I will have to have 3 units of blood and CHOP+R starting in February 2005.

What concerns me is that last year, when I had 4 rounds of CHOP+R, it only gave me 6 months of remission, so I can?t expect anything better now. I would have preferred to have Zevalin at this time, but I would not have been able to tolerate it, due to the low blood counts and low bodyweight (I am 140 lbs. and 5ft 10" tall). As I understand it Zevalin causes the blood and platelet counts to drop even further!

Zevalin (Yttrium-90 Ibritumimab tiuxetan) is a radiopharmaceutical that is approved for recurrent low-grade, follicular, or transformed B-cell NHL. Zevalin is comprised of Yttrium-90 (90Y) and Ibritumimab tiuxetan. 90Y is a radioactive isotope that spontaneously emits radiation and is linked by the molecule tiuxetan to the monoclonal antibody Ibritumimab. Monoclonal antibodies are proteins that are produced through laboratory processes to target specific sequences of certain cells. The monoclonal antibodies bind to the specific targeted cellular sequences and researchers believe that this binding stimulates the immune system to attack the cells to which the antibody is bound, as well as initiate other biological processes that aid in the destruction of the targeted cell. Ibritumimab targets the CD 20 antigen, a specific protein sequence expressed on normal and cancerous B-lymphocytes. Once Ibritumimab is bound, the radiation that is spontaneously emitted by 90Y provides additional anti-cancer effects to the cells.                                                  

As this is my second lot of CHOP and I've also had a CNOP which is almost the same, plus 2 lots of IVE chemos, this means, that I am on the limit of how much anthracycline type of drugs I can have. There is a lifetime total of 550 mgm/m2 which the heart can tolerate. After this course of CHOP, I won't be able to have anymore, that's why I am looking at Zevalin as next course of action. I just have to make sure that my blood counts are high enough, so I can have it!

(March 2005) Well, I've had 2 out of the planned 4 CHOP+R chemotherapies. This time round it has hit me a lot harder, than on the several previous occasions. Probably because I was at a pretty low ebb to start with. All those high dose chemo therapies prior to the Stem Cell Transplant, realy weakened me. My weight has dropped from a healthy 180 lbs (82Kg) to a weedy 140 lbs (64 Kg) in the interval since the transplant! I still have no appetite, so I can not regain the weight I lose after each chemo. There is a 3 week respite between treatments, but it's just not enough time to regain the weight I lose due to the chemo.

All this means that I won't be able to have "Zevalin", which is really the last resort. There are not many other options open to me. Still we just have to wait and see, how things are at the end of this round of chemo, which will not be until April.

^{1st of March 2005}

---

Update

(May 2005) Just to bring you all up to date, I've finished this last course of 4 CHOP+R about a month ago, and had another CT-scan last week (3-5-05). I saw my Oncologist a few days later and he said that the scan showed no new lumps, and the ones in my lung have either disappeared or shrank in size. The ones in my neck went down after the very first chemo.

He is going to consult his colleagues to determine whether I would benefit from having Zevalin. In any case he wants me to build up my reserves, before he would recommend further treatment. My blood counts have gone up a bit, and the important ones, from the Zevalin p-o-w, the white cells and the platelets are in the normal range, though at the low end.

I reminded him, that the periods of remission I've been getting get shorter after each treatment. The Auto-PB-SCT only gave me a few weeks respite, before the tumours were back, although in a different place. So I'm afraid that I shall need further treatment very soon. He agreed and said, that if I can't have Zevalin, he'll put me on a maintenance Rituxan regime.

So now I'll have to wait another month before any decisions are made, still it's a month without chemo and long visits to the hospital, can't be bad!

---

Extranodal Lymphoma

(Jun 2005) The Beast is back again! I had only finished my last CHOP+R, 8 weeks ago and then last Wednesday I found a lump in my back. It must have sprung up overnight, but it's already some 4" x 3" x 1". Then I found another smaller one in my thigh. As it happened I already had an appointment with my Oncologist last Friday (3-6-05) and he's confirmed that it is the Lymphoma returning, only this time it's "extranodal"!

I had asked for the appointment in the first place to discuss having Zevalin. Unfortunately I won't be able to have it now anyway, because they'll have to reduce the lumps first and then they have to get my blood counts and bodyweight up.

So I am to have CVP+R, starting next week. I cannot have any more Anthracyclin type drugs (Mitoxantrone, Epirubicin, Doxorubicin, etc.) as I have reached my lifetime limit of 550 mgm/m2. (I've had a course of 6 CNOPs, 2 lots of IVEs, plus 2 lots 4 CHOPs). That's about as much as the heart can tolerate.

It looks like that I will lose my hair all over again, just as it started to grow back! Still that's the least of my worries, I shall probably have to stay on some sort of Chemo for the rest of my life.

---

Good News, Bad News

(Jun 2005) The good news is that the tumours disappeared 3 days after the  first chemo in this cycle. They just "melted away"! I was really pleased, as the chemo seemed to be working and the side effects are quite bearable. Just the usual fatigue, loss of appetite and weight. On the other hand, my hair is still  growing.

The bad news is, that a few days later, the lumps have started to come back! They are in the same place as the last time and nearly as big as before. This time there are some extra ones on my head! These are fairly shallow but quite wide spread on one side, behind my ear. I am trying to get hold of my Oncologist, to ask if there might be some interim treatment available, as my  next chemo is not due for another 2 weeks!

---

Shingles !!!

It would seem that the lumps on my head were not due to the extranodal lymphoma, they were the beginings of Shingles! I've had them before my NHL diagnosis and recognised the signs. Unfortunately not until it was too late to get an anti-viral treatment to nip them in the bud. I went to see my GP for some more painkiller, as the lump on my back has started to hurt and I'm having trouble sleeping again, It she who confirmed that it was shingles and prescribed Carbamazepine, which is an anti-epileptic drug, but also works on the nerves and might ease the pain.

People who have had chickenpox (Varicella Zoster) in their youth can develop shingles (Herpes Zoster) in later years. During an acute attack of the chickenpox virus, most of the viral organisms are destroyed, but some survive, travel up nerve fibers along the spine, and lodge in nerve cells where they may lie dormant for many years. A decrease in the body's resistance can cause the virus to reawaken decades later. It then travels back down the nerve fibers to the skin's surface.

The reawakened virus generally causes a vague burning sensation or tingling over an area of skin. A painful rash usually occurs two to five days after the first symptoms appear. A cluster of small bumps turns into blisters that resemble chickenpox lesions. The blisters fill with pus, break open, crust over, and finally disappear. This process takes four to five weeks.

A painful condition called post-herpetic neuralgia can sometimes occur. This condition is thought to be caused by damage to the nerves, and can last from weeks to years after the rash disappears.

I have also noticed that another on of the lumps on my back has the red marks of the shingles on it, so it must be spreading. This is not really surprising as shingles hit you when the immune system is compromised and mine is pretty bad. It is not yet a year since I've had my Stem Cell Transplant, when they effectively kill your immune system. I hadn't had time to recover from that, before I relapsed again with Lymphome, and had to have more radiation and 2 cycles of chemotherapy. Currently I'm on my third one.

I wonder what this horrible disease is going to throw at me next?

---

It wasn't Shingles after all!

As it turns out that the lumps on my head were not Shingles after all, but another form of Extranodal Lymphoma! I saw my Onc on Friday (8-7-05) and he assured me that they will dissappear with the chemo, which I was due to have that very day.

He put me back on CHOP+R instead the CVP+R, which I was having before and he increased the Prednisone from 5 days to 21 days @ 40 mgm/day. I was surprised that he put me back on the Doxorubicin as I've had my lifetime limit of Anthracyclines, but he thought that the lesser of the two evils. The lumps have got to go!

He was right about that, lumps have already started to shrink. I am just hoping that this time the tumours don?t come back before the next chemo is due in 3 weeks time. I imagine that the extra steroids should help.

The tumours on my head stopped weeping and scabbed over. It sure won?t look pretty when my hair falls out again with the CHOP+R!

The Onc still won't recommend me for Zevalin, first he wants to get me stronger! However, whilst I'm on chemo I get weaker. It's a vicious circle!

July 2005

---

Just to bring you up to date. I've had the results of my CT-scan and it showed that I still have some lymphoma in my lungs and around my kidneys. The good news is that there are no new ones!

 

However, the lumps in my lungs might explain the very bad cough, that I've had for some months  and which seems to be getting worse. The Onc didn't offer any remedy for it, but one of the nurses recommended "Simple Linctus", I've tried it, but it doesn?t seem to do much good.

 

In view of the fact, that the last 6x CHOP+Rs hadn't proved too successful, I brought up the subject of Zevalin with him, once again. But, he wants to give the Rituxan maintenance a chance. I argued that if in combination with CHOP it didn't get rid of all the tumours, how can it do it on it's own? His reasoning was, that even if the MabThera (Rituxan) only keeps the disease at bay, it will give us time to get me ready for a RIT (Zevalin or perhaps Bexxar)

 

My blood counts were near normal, so it shouldn't take too long to reach the "window of opportunity" as he calls it. He is willing to send me to Christies in Manchester for an assessment, to see if I'm suitable for Zevalin, but not until I've tried the Rituxan maintenance for a while.

 

So I'll just have to wait and hope for the best!

October 2005

---

November 2005

Unfortunately the Rituxan maintenance didn’t work. Within a week of finishing the first treatment, the extranodal lymphoma was back. This time I had lumps on my head and in my leg! The pain on the top of my head started soon after.

The Oncologist said, as I cannot have anymore CHOP,  and as I have exceeded my lifetime limit of  Anthracycline drugs, i.e. Doxorubicin, he would put me on Fludarabine, which is an antimetabolite chemotherapy drug.

The regimen would consist of 80 mgm of Fludarabine on 3 consecutive days with Cyclophosphamide and Rituxan on the first day. I would also carry on with the Prednisolone, which I have been taking non-stop since the CHOP+R chemo.

I had the first cycle of FC and the pain disappeared almost instantly, thank goodness! The lumps turned into blisters, which in turn scabbed over. Luckily, my hair has started to grow back, so it should hide them a bit, as it’s not a pretty sight.

So now, we have to wait and see if this treatment is going to work in the long term. It would be nice to have a long remission, some months, rather than days.

All these medications have given me other complications. I now have Peripheral Neuropathy (numbness) in my fingers and thumb of my left hand. A very swollen and painful right ankle, which might be Osteo-Arthritis, so I will have to see yet another specialist. I’m beginning to get fed up with going to hospitals.

So if this treatment is not going to work, then I will have to consider very seriously getting a second opinion on the feasibility of being given Zevalin!

 

---

       

---

                        Add your Website to a Search Engine !

Search Engine Submitter

Website URL:

Your Email:

Web Hosting · Blog · Guestbooks · Message Forums · Mailing Lists
Allwebco Web Templates · Build your own toolbar · Site Building Articles · Audio, Fonts, Clipart
powered by bravenet.com