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Faces of Chemotherapy

Update 050622:
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Tomorrow is going to be the day: "I'm coming up so you better get this party started"...:-)
("Get the party started", copyright by Pink)

Third round in the old-man-simulator...this time, for allogeneic transplant. I try to take it with humor...

Update 050617:
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The MDs found a matching cord blood. The health checks were all quite OK, and so the date for transplant has been shifted one month from end of July to end of June. I will go to sterile room sometimes next week (20.06. - 26.06).

Update 050531:
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There is no matching unrelated adult donor for me. The MDs have started a search for matching cordblood.

Update 050416:
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I am back home again - my Leuko-count went up to 12.000 on 16th of April, and Ery- and Thrombo-counts also were going up.

I am incredibly weak - walking up stairs is a huge problem - I have to walk up very slow.
But of course I am very happy to be back home again.

Update 050329:
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High dose chemo inside sterile room will start on 050330, i.e. tomorrow. I do not know if I have an Internet connection in there, so it could well be I will not be able to post new photos for 4 weeks or so.

Update 050314:
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The bone marrow of my brother does not match. The MDs will initiate worldwide search for a matching donor on Friday.

Update 050301:
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Have been in private ordination of a well-known cancer specialist. The therapy he sketched for me far surpassed my worst apprehensions:

1. Three more cycles of Gemzar to stabilize the cancer, which is already feeling very lively again.
2. High dose chemo plus *autologous* bone stem cell transplant afterwards (I still have stem cells left from 2002), within sterile room, in order to minimize tumour masses.
3. After some weeks pause: (not so extremly) high dose chemo plus *allogenic* bone stem cell transplant afterwards. Again in sterile room, but this time my stay will be much longer, as it is not my own stem cells.

As a matter of fact, I would receive a new immuno-system. There is a good chance this new immuno system will start to fight the remaining cancer cells.

Well. Next step: check my HLA phenotype.

I have one brother, and the MD told me there is a chance of 30% that my brother's bone marrow will fit. We will both have our blood checked within the next days, and it will take ~ 10 days to know if he is a match.

If not, it will take aproximately 3-4 months to find a matching bone stem cell donor. My chances are again 30%.

So there is a 40% chance that there might be no matching donor, he explained.

If you, the reader, happen to read this lines:

I will keep you informed if my brother's bone marrow is a match and also concerning my HLA-phenotype (results should be here within 10 days).

Who knows, maybe somebody reads this who is a matching bone stem cell donor.
It takes only 20 ml of blood to have this checked.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

I was diagnosed with lymphoma cancer (Morbus Hodgkin) in 2002. Chemo did not really work and the treatment still continues today. Till now, I have received 19 cycles of chemotherapy.

For all who have been recently diagnosed and would like to know what is expecting them, and for all familiar sufferers, I have posted my cancer photo diary.

Some facts:
1. Normally, Morbus Hodgkin can be handled very well by Chemo. Your chance for remission is approximately 96%
2. Yes, it's possible to survive Chemo. It's not a nice time, but it's more or less OK. Make sure to drink as much (Water!) as you can. The more you drink, the better for your kidneys. Also, the more you drink, the less sick you will be.
3. Don't let the MDs (and the Chemo) ruin the veins of your arms: have them implant you a Port-A-Cath (central venous catheder).
It will save your veins; I received my Port only after 6 cycles in March 2003, and the veins in my arms are still kaputt.
4. You will receive lots of Cortisone. This steroid could be called the "eunuch-hormone", when considering the side effects it has: it makes eunuchs from men (OK, it will not touch your libido. Or, to be more exact: it didn't touch mine, but I haven't exactly discussed this topic with other M.H. patients. So your mileage may vary) - you will add a lot of fat, muscle mass will shrink, bone-density will decrease. Result: fat body and face and neck, but thin, flabby arms and legs.

One more thing: Cortisone is said to make people agressive and cause terrible mood swings.
To this I would like to say: it will only enhance an agression that already is inside one.

I never ever was agressive when receiving cortisone - I had my Cortisone-highs when receiving it (the side effects start around day 3 usually) and I always had terrible withdrawal symptoms when it was discontinued, but no increased levels of agression. But then, I am not a very agressive man.

Anyway.

If it turns out BEACOPP (the golden standard of Morbus Hodgkin treatment) doesn't work with you, either refuse Cortisone at all (it then most probably will not help at all against the tumor).

Or if you are male, discuss with your MDs if it would be possible to have a mild anabol steroid, like Primobolan, instead of Cortisone. In principle, it will have the same anti-inflammatory, anti-emetic features and will let you keep your muscle mass and bone-strength.

If you are a woman, well I don't know what to do. Sorry...

Anyway, I am not a MD at all, so it's just what I would do. So your mileage may vary...

In any way, that's what I learned during the last 30 months: for Morbus Hodgkin, it's really best not to have it, or if you have it, it's good if BEACOPP works, and if it doesn't work, be prepared for lengthy chemo and get rid of Cortison and have a Port-A-Cath implanted.

The image-names mean the dates when they were taken, like this:
YYMMDD, so
021024 = 24th October 2002
040305 = 5th March 2004
Carl Summer 1995.jpg
Carl Summer 1995.jpg
020801.jpg
020801.jpg
020803.JPG
020803.JPG
After bronchoscopy 020803
After bronchoscopy 020803
020805.jpg
020805.jpg
020816.jpg
020816.jpg
020829.jpg
020829.jpg
020831.JPG
020831.JPG
020913.JPG
020913.JPG
020915
020915
020915.JPG
020915.JPG
020922.JPG
020922.JPG
lady 030929.jpg
lady 030929.jpg
021009.JPG
021009.JPG
021020.JPG
021020.JPG
021029.JPG
021029.JPG
021124.JPG
021124.JPG
021219.JPG
021219.JPG
021223.JPG
021223.JPG
030103.JPG
030103.JPG
030105.jpg
030105.jpg
030110.jpg
030110.jpg
030122.jpg
030122.jpg
030212.JPG
030212.JPG
030312.JPG
030312.JPG
030421.JPG
030421.JPG
030609.jpg
030609.jpg
030810.jpg
030810.jpg
030918.jpg
030918.jpg
031011.JPG
031011.JPG
031022.jpg
031022.jpg
031206.jpg
031206.jpg
040107.jpg
040107.jpg
040302.JPG
040302.JPG
lady visit 040303
lady visit 040303
Johanna Ebenberger 040304
Johanna Ebenberger 040304
040305.jpg
040305.jpg
parents visit 040305
parents visit 040305
stem cell re-infusion 040309
stem cell re-infusion 040309
040313.JPG
040313.JPG
040319.JPG
040319.JPG
Sterile room survivor 040319
Sterile room survivor 040319
040426.JPG
040426.JPG
Radiation Markings 040517
Radiation Markings 040517
040607.jpg
040607.jpg
040823.JPG
040823.JPG
040913.JPG
040913.JPG
040917.jpg
040917.jpg
Lady 041002.jpg
Lady 041002.jpg
041025.jpg
041025.jpg
041215.jpg
041215.jpg
Carl in Venice 041225
Carl in Venice 041225
The Machinist anyone? 041227
The Machinist anyone? 041227
050106
050106
Lady sad 050108
Lady sad 050108
050123
050123
050205
050205
shaping up 050217
shaping up 050217
050228
050228
Carl 050309.jpg
Carl 050309.jpg
050318
050318
050325
050325
plunging into hell 050330
plunging into hell 050330
carl 050401 b.jpg
carl 050401 b.jpg
carl 050401 a.jpg
carl 050401 a.jpg
pyramid shape 050402
pyramid shape 050402
Carl 050402 1.jpg
Carl 050402 1.jpg
Carl 050404.jpg
Carl 050404.jpg
stem cell transplant 050406
stem cell transplant 050406
Carl fever 050408.jpg
Carl fever 050408.jpg
zombie teeth and gum 050409.jpg
zombie teeth and gum 050409.jpg
family on visit 050409.jpg
family on visit 050409.jpg
deer viewed from sterile room.jpg
deer viewed from sterile room.jpg
050411 - this is EUR 3000
050411 - this is EUR 3000
chemo survivor 050412.jpg
chemo survivor 050412.jpg
carl 050414.jpg
carl 050414.jpg
Carl 050415.jpg
Carl 050415.jpg
Carl 050417.jpg
Carl 050417.jpg
Carl 050421.jpg
Carl 050421.jpg
Carl 050423.jpg
Carl 050423.jpg
050425.jpg
050425.jpg
050429.jpg
050429.jpg
050429 1.jpg
050429 1.jpg
the kitten 050430
the kitten 050430
050508.jpg
050508.jpg
050515.jpg
050515.jpg
050520 Wenn der Sommer nicht mehr weit ist (Konstantin Wecker)
050520 "Wenn der Sommer nicht mehr weit ist" (Konstantin Wecker)
050526
050526
050603
050603
050611
050611
050618.jpg
050618.jpg
050623.jpg
050623.jpg
050624.jpg
050624.jpg
050626 - ATG, PSP, and many cables of various kinds
050626 - ATG, PSP, and many cables of various kinds
the bunnies 050627.jpg
the bunnies 050627.jpg
20-cycle-Chemo survivor 050628.jpg
20-cycle-Chemo survivor 050628.jpg
tilt shift 050629.jpg
tilt shift 050629.jpg
Sleeping after first rebirth 060530
Sleeping after first rebirth 060530
try the dry heaves 050702.jpg
try the dry heaves 050702.jpg
nearing rock bottom 050703.jpg
nearing rock bottom 050703.jpg
eat to avoid the dry heaves 050704.jpg
eat to avoid the dry heaves 050704.jpg
swollen face 050706.jpg
swollen face 050706.jpg
hatching an infection 050707.jpg
hatching an infection 050707.jpg
cruising towards rock-bottom 050708.jpg
cruising towards rock-bottom 050708.jpg
pneumonia 060710.jpg
pneumonia 060710.jpg
eat a little bit 050711.jpg
eat a little bit 050711.jpg
trying a joke 050712.jpg
trying a joke 050712.jpg
the small c-pak 050713.jpg
the small c-pak 050713.jpg
050715.jpg
050715.jpg
050718.jpg
050718.jpg
grandma visiting 050719.jpg
grandma visiting 050719.jpg
the big c-pak 050720.jpg
the big c-pak 050720.jpg
050722.jpg
050722.jpg