Travel Where You’re Understood - A Myeloma Network

29/03/2026

29/03/2026

Good day to all fighters,

We love, we live, we breathe, we walk and yet there is something different. I think we are among the greatest fighters in the world.
From the outside, everyone praises us for how good we look. Inside, few understand what we are going through.
Sometimes we don't even understand ourselves.
So here I am again after half a year in my beloved Egypt. The flight lasted less than 4 hours and went perfectly fine.
After arriving, I was at the hotel for dinner in about 20 minutes.
I try to walk at least 10 km every day and it obviously does me good.
I am always a little tired, so I use my willpower to force myself to go and do something.
I still feel something similar in my body that we experience with the flu.
I know that fatigue is one of the most common side effects of our illness and treatment.
Unfortunately, no one has explained to me why this is so.
Are the white blood cells somehow damaged, are they somehow changed, reprogrammed?
Is the bone marrow working differently?
What actually happened to our body, what is happening? How to fight it effectively?
Does anyone have an explanation?
My paraprotein and kidney results are at the lowest level I have ever had after two months without treatment.
I thought it would be much better.
Nevertheless, I still have hope and the strength to fight.
Tomorrow the wind is supposed to start blowing and I will go kiteboarding again, where I will forget all my problems.
Be safe, not like that Egyptian bricklayer on the fourth floor, while building a hotel 😊

Sending strength and hope from Egypt
Dušan
Odeslat zpětnou vazbu

23/03/2026

Hello warriors
third month without treatment and still the same as most of us. Last week also a virus without fever. Just sinusitis, runny nose and cough. I'm trying to do it without antibiotics and wait as long as my body and I can stand it. Tomorrow is my last day at work and on Wednesday, hooray for Egypt, Hurghada and kiteboarding :)
I'm wondering if I'm crazy and at 58 years old I shouldn't give up on MM. I've had MM for four years. At the beginning of treatment, the doctor told me that thanks to treatment and medication, we have a chance of living for more than ten years. My goal is to celebrate at least 60.
The body has changed, life has changed and it's still trying to get used to it. I want to do things and live like before the illness. It just takes more strength, willpower and an effort to be optimistic. I'm also trying to be a motivation for other patients.
So I'm packing my clothes, kiteboarding gear and the rest will be seen on site.
I will definitely send information from Egypt on how it all goes to motivate similar madmans :)
Have a nice day from Czech
Dušan

23/02/2026

Hello warriors

Saturday's company skiing took place right in our city this time. I also used one of the last winter days to not break the tradition of annual skiing with my daughters.
I skied for about 1.5 hours myself. But our illness, side effects and my age of 58 are already showing :)
I held out, but my body is really tired more than I would like :)
Thank God that I can still do my sports at least to a limited extent. In the second half of March I am going to Egypt for kiteboarding. Hopefully the partial remission will still hold and let me do my beloved sports and enjoy a wonderful life for a while longer.
I wish the same to all of you, enjoy the good times.
Greate from czech republic 🤟🪂❤️

13/02/2026

Hello warriors,
I waited two months to post another post, until the first check-up after interruption my treatment. Blood results are absolutely fine, today I found out that I also have the lowest paraproteins I have had since the beginning of the disease. Paraproteins 75 and partial remission is fine. I thank my doctor, God and everyone for the support.
However, my whole body and muscles are constantly hurting. Still, I try to exercise and do light sports. I don't know exactly why, but I think my body was used to three years of chemotherapy and is now trying to cope with it.
The fatigue is also still the same, I hope everything will ease and it will get better.
As patients with MM, unfortunately, we will not find out whether the condition of the body is caused by the treatment, side effects or simply old age 🙂
Like most of us, I try to motivate myself positively every day and live a normal life.
In the second half of March, I am going to start the kiteboarding season in Egypt.
Greetings to you all and wishing you lots of strength from the Czech Republic
Dušan

04/01/2026

Hello warriors,
I would like to wish you all health and well-being in the new year.
Just before Christmas I had my "last treatment" after three years.
I am in partial remission and will be monitored regularly. The doctor told me that he wants the body to rest from the treatment and also thinks that the remission could last for some time.
So I hope he is right. I also hope that I will experience some time without side effects and will at least feel like a healthy person again. I would also like to use this time for my sports, skiing and kiteboarding.
I know how difficult it is for all of us to live with our treatment and illness. Side effects are different for everyone, but we can all understand them. Unfortunately, I cannot describe them exactly myself, but it is the familiar fatigue, stuffy ears, a slight noise in my head. I still hope that it will disappear in time.
I wish you a nice day and a lot of strength.
God protect us

13/12/2025

Svět se v zadel obrací. Pornoherec a pokrytec oddava snatky. To je fakt síla.

Dnes jsem poprvé v životě oddával.

Po 30 letech soužití se jeden z velkých podporovatelů naši strany PRO rozhodl vzít za ženu svoji přítelkyni Danku.

A protože jsem mu už před volbami slíbil, že pokud se stanu poslancem, tak budou prvním párem, jenž oddám, tak jsem dnes jel s radostí splnit své slovo a v Ostravici je provedl svatebním obřadem.

Pevně doufám, že jin má přítomnost přinese štěstí.

Přeji krásný slunečný den vám všem!

26/11/2025

Hello all warriors
Next month I will have a break from treatment after three years and I hope to use the next year for my activities.
I would like to use my "Travel Where You’re Understood" page and address you all with a request.
I love the sea, the heat, the wind and kiteboarding. I would like to spend 3 weeks next year in January or February in a place where I have not been before and where the conditions for my sport are magical.
I don’t want it for free, but I would like to reduce the costs. The main thing for me is to spend time with my illness in a place where I will have facilities, someone who will help if necessary. I only need a bed, a toilet and a small possibility to cook if necessary. I will spend most of my time on the beach or exploring the place.
I also offer accommodation in my house, completely free of charge while exploring the Czech Republic for people with MM and of course help during the stay.
Thank you in advance to our MM community
Have a nice day from the Czech Republic

19/11/2025

Today's doctor's visit and darzalex biotherapy.
Results confirm paraprotein stability. Today confirmed last treatment in December and planned treatment interruption.
My 11:14 variant with kidney damage came very slowly. I assume that something was happening in the body for three years before the kidney biopsy and the disease was discovered. That is also why I hope and pray for longer remissions.
12/2022 biopsy and start of treatment - Bortezomib/Myrin/Dexamethasone - weekly
This treatment lasted about 5 months and according to the doctor it did not work well.
It had to be used according to the insurance company's rules at the time. Today he is starting treatment with darzalex straight away.
Drowsiness, fatigue, fog in the head, depression, anxiety, confusion
I went to work - automotive quality manager. Reduced performance, handing over part of the duties to colleagues.
I tried to walk and run.
Since 5/2023 Treatment started
Darzalex 1x 2 weeks,/Lenalidomide 1x daily/Darzalex 1x two weeks
Treatment started working, reduction of paraproteins and creatine
Fatigue, foggy head, anxiety
I went to work, working hours reduced to 5-6 hours
I tried to walk and run.
7-8/2023
2x collection for autologous transplantation - unfortunately some contamination in both - transplantation was not recommended. After both collections, hair loss, loss of appetite and antibiotics started. Month-long recovery. I went to work and tried to walk 3-4km daily.
9/2023 - 11-2025
Conventional treatment - Darzalex 1x 2 weeks,/Lenalidomide 1x daily/Darzalex 1x two weeks
Darzalex from 7/2023 1x monthly
Lenalidomide from 3/2025 canceled / Paraprotein stable even on DARZA and Dexam.
1/2024 - day on skis and in the mountains with daughters. Then light other sports
5/2024 2x independent parachute jump
4 and 9 2024 Kiteboarding in Egypt. Regular travel. Visits to restaurants. I go to work part-time.
9/2004 - 11/2025
Without illness, flu and cold (possible 1x common flu and 2x cold) 2024 and 2025 autumn covid vaccination.
2025 3x in Egypt kiteboarding, no complications.
Sports, tennis, e-bike, skiing, kiteboarding.

I know, it looks very good and positive. I really want it to be that way.
However, it is not that easy and free.
Plugged ears, alleged 20% hearing loss
Light constant whistling in the ears, sometimes more, sometimes less
Occasional pain in the jaws and joints as during sports (unfortunately probably from the treatment)
Undefined fatigue - practically a daily struggle - I don't deal with it, when I don't feel like it, I rest. I don't blame myself anymore.
Fog in the head - allows for a kind of surrender (it helps quite a bit, reconciliation, sometimes surrender, apathy) I don't do so much for others anymore, but I think more about myself.

12/2025 Doctor's recommendation to discontinue the entire treatment based on the results of 2025 Paraproteins.
Darzalex principle - supposedly allows for longer remissions.
I pray for at least two years. Rest of body and soul. Plan for 2026 full of Kiteboarding in Egypt and other locations and full life again. Enjoy !!!
I'm curious if some side effects will remain, or at least decrease.
Checkup 1x in two months.

I pray for myself, family and all fighters
Good luck and love to all from Czech Republic

14/11/2025

Hello warriors. The time is approaching when I will be off treatment after three years. I have been off lenalidomide for 7 months now. I only have Darzalex once a month and dexamethasone once every two weeks. MM damaged my kidneys, which the treatment saved. Today I only have slightly reduced kidney function, creatinine around 140. Kapafree stable around 80 and partial remission. According to the doctor, due to the condition of my kidneys, I will not reach complete remission, but it should last for some time. I will hope that the disease will give me some peace and I will be able to enjoy a relaxing period.
I realized that I am quite tired after three years thanks to the treatment and side effects. I think that this fatigue is mainly caused by the daily fight with the disease. The daily side effects are quite unpleasant. I still feel blocked ears, a slight whistling in my head, a slight fog in my head and a feeling of the flu coming on. It is quite challenging to experience it every day without interruption.
I started the treatment from the beginning without interrupting my work. For the last six months I have been working part-time and I am thinking about quitting completely and starting to devote myself to myself.
I still try to do sports, play the guitar and work around the house. Sometimes it is more demanding.
I would like to ask if there is anyone among you who, after interrupting the treatment, started to feel like a healthy person in full condition again?
How do you feel otherwise?
Do you think we will get over this completely one day?
I wish you all a nice and peaceful day from the Czech Republic

24/09/2025

Lets share please 🙏

24/09/2025

Dear MM fighters,
my return from Egypt was successful, without injuries or other problems 🤙 I enjoyed a really wonderful 14 days, 11 of which I spent on the water kiteboarding. 🤙
Unfortunately, our disease is very unfathomable and I still can't properly describe the side effects 🧐 After my return, I didn't have the strength to sit down and write anything for a week, after returning from work I just lay down, rested and watched TV. Slight fatigue, slight body tremors, like when the flu starts, and still blocked ears and a soft noise in my head.
Today it's better and the day before yesterday I was already on my bike.
Today I also had a regular check-up and a dose of darzalex and dexamethasone. Still without lenalidomide. I am in partial remission. Kappa Free paraprotein still between 70 and 90. The doctor told me that I probably won't get to normal values, due to reduced kidney function.
At the end of the year, I am supposed to have a treatment interruption, completely without all medications. They say we will try it, we will watch and see. I pray and I really hope that I will have at least 2-3 years of peace from the disease. The doctor told me that we can always return to treatment.
I also pray that during that time, there will be drugs, treatments in the world that will get us out of this completely.
We must support each other and give each other strength. We are true fighters and we must not waste a single day. Let's try to move and move forward every day.
I wish everyone strength, will and happiness
Have a nice day from the Czech Republic 🥰
Dušan
I would also like to ask you all. My website was founded for us for everyone. We have the opportunity to offer our rooms for free, to the same patients as us. So that they can get to know our country and surroundings with little expense and safely.
Please share 🙏🙏🙏