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Peter Randlov

 

   Sharing baked apples with granddaughter Lene

Copenhagen, Denmark; randlov@post9.tele.dk

1942 / Class of '97 / Updated: 8/15

My story -- up to now -- has been positive. My story will not help those who have suffered much from MM, but hopefully I can cheer up some of those with newly diagnosed MM and starting up a treatment plan.

I am 56 years old and was diagnosed with MM July 1997. Today my doctor told me it was stage III. My wife and I are very active people living a healthy life with healthy diet, much physical activity (cycling) and no smoke. Together with some friends we had planned a five-week trip to Ecuador and Galapagos including a one-week stay in the Amazon jungle. Due to the jungle we had to have a yellow fever vaccination, which knocked me out completely giving very high fever.

At the beginning the hospital was not able to figure out what was wrong testing for malaria and other exotic diseases, and two day before the scheduled departure they advised us not to leave. After a BMB they found out it might be MM, and followed by X-ray and MR-scan they gave the final judgment after seeing injury to the spine and fractures of ribs. Beforehand I did have back problems, but I had just finished a two-year project writing a book and done some other computer intensive work, so I assigned the back problems to bad working habits. The blood and urine did not show sign of protein, so only the BMB lead to the diagnosis.

In August I received 20 X-ray treatments of the spine. After the fifth treatment the back pain was   considerably reduced, and there were hardly any side effects and no nausea.

From September to December 1997 I had 3 x VAD. Although the 4 x 24 hour infusion of the V and A was a psychological strain the side effects were minimal. The Decadron part had huge effect on my mood. I hardly slept for four days during each period managing all kinds of practical chores sleeping for four days afterward.

From the beginning a stem cell transplant was planned, and reading about how bad it could be, I did much effort to keep in shape. Among other things we bought a exercise bike, which I use each day at least for « hour with pulse 140-150. This certainly helped me when I finally had the transplant. In the beginning of January 1998 back up stem cells were harvested and January-February after Neupogen injections and Cyclophosphamide chemotherapy stem cells were harvested in two two-day sessions after deciding that I should participate in a protocol with tandem transplants. Again the side effects were minimal, it was first after the second treatment with Cyclophosphamide I lost the hair.

The cells were purged and frozen, and in April I received the first transplant after high dose chemotherapy with Melphalan. At this time things were not so easy. After a few days I had herpes zoster and after three days in isolation when the WBC count was 0 they had to operate for mechanical ileus, a most unlikely complication. The day after the WBC began crawling up in number, four days later the isolation was lifted, and further two days after I was home. Luckily, we live close to the hospital, so it was easy for me to go there for the daily blood tests and shots of Nupogen.

Besides from the complications mentioned above there were, of course, side effects this time, but certainly not as bad as I had read about. Loss of hair, loss of appetite, dry mouth etc. by no pain, infections or other severe problems. The first month the word "tired" had a whole new meaning to me. It was hard to sleep 14 hours and wake up - tired! It took three months to recover and five months before I was completely back in shape exercising hard on the cycle. During this time we went two weeks on a nice vacation to Portugal taking it quite easy.

Due to the operation I had much anxiety concerning the second transplant, but from studies on the Internet, among other things, I knew that I should take the second transplant. Today it is exactly two months ago, and this time it went completely after the book. 9 days in isolation and home 2« weeks after the chemotherapy. Last month was without appetite, dry mouth etc., but again no severe side effects. An infection with multi-resistant bacteria developed at the catheter, but after removing the catheter this problem was resolved.

Now -- two months later -- I am improving very fast starting to work few hours every day. I have regained appetite after losing 5 kilos and working hard to strengthen the back and regaining the physical shape. I do have minor problems with the back, and especially in the evening there can be some pain in the spine, but not much. I am 4 cm shorter now due to spinal compression, but obviously that does not bother much.

The main problem for me at the moment is that I should feel quite happy now having carried through this treatment with good result. But I feel like being in a "vacuum" asking myself "what now?". Writing this letter is one thing I am doing to fight this problem.

Today I had a long talk with the doctor. He reconfirmed that I am in complete remission, and that the result of the treatment is the best possible. We agreed to start maintenance therapy with Interferon and Aredia in the middle of January. Monitoring the disease will be done by BMB every 6 month. By this time I have had somewhere between 15 and 20 BMBs, and it is only those taken while Nupogen has been active that have been somewhat painful.

The doctor also gave green light for skiing, so tomorrow we will book a two week vacation in the French Alps in the end of February. If this trip turns out to be a success I will be confident that my wife and I will be able to resume some of our main interests: Traveling and scuba diving.

This letter is already too long, but I would like to make another point: In Denmark we probably pay the worlds highest taxes -- you wouldn't believe me if I told you the rates. But now I benefit from it. Years of treatment has not cost me a dime, and my company has paid my wages although I haven't been
working very much. Hopefully, I can start working full time from January. I feel I have been lucky tolerating the treatment and ending up with what -- hopefully -- is a good result.

So my message to all of you is: Keep fighting, it does pay. And to many of you: You can do much yourself to improve things. And to relatives and friends: You are the real heroes.

Update 11/1999: In August 1999 I stopped interferon because of side effects, and in September no more Aredia (probably because of lack of money).

In September 1999 we had our "summer" vacation, We took a bicycle ride round lake Konstanz through Germany, Austria and Switzerland. The last week we participated in an international conference for stereo photographers, which was very inspiring. I ordered a very expensive custom built underwater stereo camera - delivery time one year - don't say I am optimistic.

I am back at my job as a consulting engineer, but my working hours are reduced to 30 per week - can highly be recommended. My employer has been very supportive all the way through.

In December 1999 my wife and I are going two weeks to Thailand for scuba diving, and the insurance company has not objected. And today we just ordered a winter vacation in March, two weeks in la Plagne in the French Alps.

I know I am lucky, but I am sure that my example proves that co-operation with the doctors, a will to survive and high spirits makes a difference.

There is hardly any bad news. I am impatient and can't understand it takes more than 12 month to come back in reasonable good shape. I work like a horse, collapse at 9 p.m. and cannot wake up at 7 in the morning. Shingles isn't fun either, but I still think I am the lucky guy.

Update 01/2002: The good news are firstly that our first grandchild was born July 2000 a wonderful little girl and secondly that I am still in complete remission. My wife and I have had some active years with lots of traveling and many happy hours with our grandchild.

The not-so-good news is that my constant fight to get back in shape has not been a success. Originally the doctors told me it would take about one year to recover from the last stem cell transplant, this was at the time for my last update. Now I must face the fact that it is very hard to improve your shape further after this time. In the beginning I couldn't accept this and had a quite hard time, but in March 2000 my employer and I agreed that I could reduce my working hours, which during 2000 turned out to be about 12 hours/week. In November 2000 I was granted an early retirement pension. Based on this it was possible to change my employment to be hourly paid, so now I can to work as well as doing other activities when I feel like it, and stay home and take it easy the rest of the time. This freedom to plan our daily life has been a success and greatly improved our quality of life.

Before I was able to ride the exercise bike for ½ an hour with pulse 130-140 (max pulse was over 175). Now I can only kick the pulse over 130 for short period and maximum pulse is around 165. Earlier the 17 km (10 miles) ride to work took 35 minutes, now it takes 45 minutes. But that isn't so bad because many "normal" people cannot follow me.

I do not take any medication now, check-up at the hospital is just a blood sample and a short talk with the doctor twice a year. There have been treatments of some non-malignant skin cancer, which has been without complications. I don't know if skin cancer can be a side effect of the MM?

Being physically active and going on active vacations are still important for us. After a doctor specialising in scuba diving gave an ok, my wife and I went for three week to Mabul (neighbour island to Sipadan East of Borneo). Both the diving and my 3D underwater photography was a great success. Now I am frequently out to different club making slide shows. Some people think that scuba diving is for James Bond type-of-people, which is not true. Under water you are weightless and the more you relax the less air you use and can stay down longer.

In September 2001 we went to Sydney to the biennial congress for stereo (3D) photographers. I brought a slide show "Fractal Creations", which was very positively received. We did plan the trip with lots a resting days, but the trip to and from Australia is long and Australia is a huge country, so during the last part of the trip I ran out of strength. We learned the lesson and will take it easier next time we travel. We have only few plans for next year, but let us see!

Next month we go for two weeks skiing in France and we will celebrate my sixties birthday there.

Now I work two days per week and spend the rest of my time with exercise, as contact person for other MM patients, making 3D slide shows and most important looking after our granddaughter, when she is here.

Although I am still working on accepting the facts the bottom line still says: "Everything is fine and I am still the lucky guy."

The poet Piet Hein wrote:

Love while you've got Love to give. Live while you've got Life to live.

Update 04/2004: If you read my story from the beginning you might remember I was “grounded” two days before the departure on a trip to Galapagos. Well, finally we made it! January 2004 my wife and I went to Ecuador and Galapagos for three weeks. Although we planned the trip with several extra days for rest it was quite tiring, but also a huge success. We stayed two weeks at Galapagos and every day was a new fantastic experience I wish everybody could have. Taking this trip has been quite a milestone for us.

Concerning MM: I am still in complete remission, take no drugs and am checked every six months. Not much has changed. I only work at my original job a few days every month and intend to stop completely when they will let me.

Now I can use my time for the family – a second grandchild arrived last summer, a wonderful little boy, my interests in 3D photography making slide shows for friends, clubs and associations, patient work and of course, traveling.

Since the last update we have been on two three-week trips to Mabul, Borneo for scuba diving, and this year our annual ski trip was to Whistler, Canada (we just came home, I still have jet lag).

It is becoming increasingly clear to me that staying in shape is the most important for a MM patient (or actually for everybody). Exercise every day at least one half hour (light or hard whatever your condition allows you). Exercise improves your quality of life in any aspect; e.g. it even reduces tendencies to depression, so keep going.

On one of lifts in Whistler it was written on the white board:

Love the life you live

and

live the life you love!

Best regards to all of you from Peter Randløv

January, 2009: 5 years has gone since my last update, so it is definitely time again to tell that I am still going strong. Now both my wife and I (both 66 years) are retired, so we have plenty of time for our two grandchildren and for travelling. Since 2004 among other places we have been three times to Greenland, and in 2007 we were 5 weeks in USA where one of the highlights was a 7 days trip on the Colorado River through Grand Canyon. We are still both active scuba divers and have just returned from Bonaire in the Caribbean where we had our 400th dive. My interest in 3D photography is quite time consuming, I am quite often invited to different societies and clubs to show 3D slide shows with stereoscopic slides from both over and under water. We always attend the congresses of International Stereoscopic Union, 2007 in Boise, Idaho and this year in Austria.

The work with patient groups has expanded, so I am often out speaking on the theme “Quality of life – what can you do yourself”. In 2003 I was asked to join an ad hoc group of Myeloma patients and thalidomide victims at EMEA (the European FDA) concerning the approval of thalidomide for treatment of Myeloma. The meeting initiated the formation of European Myeloma Platform, EMP, which is an umbrella organisation for Myeloma patient associations within the EU. The active contribution from EMP during the approval process for thalidomide and Lenalidomide resulted in a risk management system acceptable for the patients, where treatment and risk management solely is a matter between patient and doctor, as opposed to the US S.T.E.P.S. programme, which really impairs the privacy and rights of the patient. EMP cooperate with EU authorities and other cancer organisations, among those also IMF. Presently I represent the Danish patient association in EMP.

Concerning health I am still doing fine being in complete remission. However, age is beginning to take its toll. In 2006 I had a small lung emboli and presently I am being treated with radiation for skin cancer on the nose! Age or Myeloma – I don’t know, but my energy is not what it used to be. It takes lots of exercise to stay in shape, but there are limits and I must learn to take it more easy in the future. There is a small Danish rhyme, which in English says:

Love while you’ve got love to give. Live while you’ve got life to live.

So why not keep up the steam?

All the best and good health to all of you from Peter Randlov

Update August 2015: It’s now 6 years since my last update, so it is about time. I am now 73 and still going strong (more or less). It is 18 years ago I was diagnosed with MM, and I have not relapsed since. I almost managed to convince myself that I was cured, but due to improved accuracy they can no measure a small M-component at the annual check-up at the hospital. However, myeloma is not in my thoughts so often anymore.

In 2011 I was diagnosed with heart fibrillation, which ended up being continuous. After treatment with all kinds of medicine, which were supposed to reduce the symptoms, not to cure. Finally I had a cardiac ablation the problem was totally gone, so I could return to a almost normal, active life. My wife (72 years) and I enjoy life. Since 1997 we have had two grandchildren, now 12 and 15 years, they live close by.

We are very fond of cycling, all local trips are normally on bicycle, and whenever possible we bring our cycles when we are on vacation. During the summer we swim every day, and during the winter once a week in the local swimming hall.

This year we went to Jordan mainly to see the ancient city Petra, it was a great experience. Next trip was to Svalbard to experience ice bears, walrus, seals, whales, birds etc. and we were certainly not disappointed. In the end of this month we leave for South Korea to join a congress of International Stereoscopic Union, which is about my favorite hobby, 3D-photography. This might be our last oversea trip because of the long flights, but there is plenty to experience here in Europe as well. For many years we were active scuba divers and skiers. Both gave us many wonderful experiences, but now we take it easier.

Our receipt is: Be active, lots of exercise, eat healthy, don’t smoke (and don’t drink too much red wine  I don’t know if it does any difference to the treatment of MM, but it certainly has a great influence on your quality of life and to resist the bumps on the road there inevitably will be.

Best regards and good health to all of you from Denmark.

And now the photos:

This photo, from 1999, speaks for itself. All the young boys now have very short haircuts, but I didn't feel that sexy - I have my normal hair now.

   

 

This was taken on the Storebaelt Bridge, the new suspension bridge between Fuenen and Zealand: the worlds second largest. It was opened for joggers, roller-skaters and bicyclists for one day June 5, 1998 seven weeks after my first transplant. I had to show the photo to the doctors to prove my participation.                                 

      

 

 

 

This one is part of a stereoscopic photo in a series I am working on called "Fractal nudes". No further explanation - it's a long story.

-- Peter

 

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