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RT Treatment Plan in La Jolla
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01/12/2011 04:30
debrr 
01/12/2011 04:30
debrr 
RT Treatment Plan in La Jolla

Called and talked to Dr. T's nurse today... so I have some more information on my coming treatment. I will start Monday the 17th at 3:30 PM.

I asked how many nodules I had and was told again...worst case ever seen. There are no nodules only a huge mass on both feet. This showed on MRI done there last week.

I will have 20 Gy in 10 fractions(treatments) over 2 weeks.

I am lucky, I am retired military and I can stay at Mirimar Marine Corps lodging, so my lodging fees are reduced. My reservations have been made. Now if everything else comes together as easily. I will be driving to La Jolla. (Poor Feet)

I am sure I will have more questions before I go, so I will continue to post as I know anything....

Really glad Steve is posting his daily experience, makes me less anxious! It sure makes you feel better to know you are not alone!

Debbie

01/12/2011 06:23
newman 
01/12/2011 06:23
newman 

Re: RT Treatment Plan in La Jolla

Australia Calling, Hi Debbie There is nothing to be anxious about. You are receiving the lower end of RT. I had 30 GY. You might find that the bottom of your legs at times feels warm whilst you are having the treatment. Prof. Seegenschmiedt recommended I use a cream containing Urea, which does two things it helps to retain moisture in the skin and also helps remove the old skin. I used it for about 14 days after RT. and still do from time to time when my skin is dry. Regards

Edited 01/12/11 08:24

01/12/2011 15:52
LubaM. 
01/12/2011 15:52
LubaM. 
Re: RT Treatment Plan in La Jolla

debrr:
Called and talked to Dr. T's nurse today... so I have some more information on my coming treatment. I will start Monday the 17th at 3:30 PM.

I asked how many nodules I had and was told again...worst case ever seen. There are no nodules only a huge mass on both feet. This showed on MRI done there last week.

I will have 20 Gy in 10 fractions(treatments) over 2 weeks.

I am lucky, I am retired military and I can stay at Mirimar Marine Corps lodging, so my lodging fees are reduced. My reservations have been made. Now if everything else comes together as easily. I will be driving to La Jolla. (Poor Feet)

I am sure I will have more questions before I go, so I will continue to post as I know anything....

Really glad Steve is posting his daily experience, makes me less anxious! It sure makes you feel better to know you are not alone!

Debbie
Hi Debbie,
I looked at my paperwork from my Nov. 2009 treatment with Dr. T. and I also received 20 Gy in 10 treatments over 2 weeks. This lower dose would allow you an additional treatment in the future, if needed.

As Newman posted above...its a good idea to get a cream that contains at least 20% Urea. I bought one (its expensive) and used it after the treatment. I didn't have any side effects besides a little dryness that went away a few weeks after treatment.

Glad you found lodging at reduced fees. Good luck on your treatment and keep us posted, and enjoy the beautiful area of LaJolla/San Diego...there is lots to see there.

Edited 01/12/11 17:53

01/13/2011 04:19
debrr 
01/13/2011 04:19
debrr 
Re: RT Treatment Plan in La Jolla

Thanks for the tip Newman! Was your RT on your feet as well? Were they really bad too? How's the flooding where you are?
Debbie

newman:
Australia Calling, Hi Debbie There is nothing to be anxious about. You are receiving the lower end of RT. I had 30 GY. You might find that the bottom of your legs at times feels warm whilst you are having the treatment. Prof. Seegenschmiedt recommended I use a cream containing Urea, which does two things it helps to retain moisture in the skin and also helps remove the old skin. I used it for about 14 days after RT. and still do from time to time when my skin is dry. Regards

01/13/2011 04:28
debrr 
01/13/2011 04:28
debrr 
Re: RT Treatment Plan in La Jolla

Thanks so much for taking the time to check that out LubaM!! Dr. said I may need a second round after this but we will wait a month to know. Did you have to go back and get rechecked in a month?

Great to know about the 20% urea!! Good to know it's not cheap upfront. I will try to buy it before I go then so I don't have to go hunting for it there.

I will be leaving early Monday morning. My aunt is worried that RT will affect the circulation in my legs. I have strong familial propensity to get blood clots in my legs. Anyone know anything about this? Or should I ask Dr. T when I get there?

Also, with RT treatments, will I be able to enjoy a cocktail or two during treatments in beautiful area???

Debbie


Hi Debbie,
I looked at my paperwork from my Nov. 2009 treatment with Dr. T. and I also received 20 Gy in 10 treatments over 2 weeks. This lower dose would allow you an additional treatment in the future, if needed.

As Newman posted above...its a good idea to get a cream that contains at least 20% Urea. I bought one (its expensive) and used it after the treatment. I didn't have any side effects besides a little dryness that went away a few weeks after treatment.

Glad you found lodging at reduced fees. Good luck on your treatment and keep us posted, and enjoy the beautiful area of LaJolla/San Diego...there is lots to see there.

01/15/2011 08:37
Larry 
01/15/2011 08:37
Larry 
Re: RT Treatment Plan in La Jolla

The dose plan in LaJolla seems to work, but reagrding other fibromatosis is on the lower end,
e.g. keloids or hypertrophic scars are treated with 3 Gy single dose 4 to 5 times in a week;
same for Peyronie's disease (fibromatosis of penis !). I have specifically asked my doctor,
who was Prof. Seegenschmiedt, who works on Saturdays in Essen and during the week in
Hamburg, about the dose issue and he clearly stated that a HIGHER SINGLE DOSE is more
effective on FIBROBLASTS (i.e. the cells which grow in the palm or in the foot sole) than a
lower single dose. In his literature review he seemed to be correct.

So I considered to have the MOST EFFECTIVE TREATMENT first instead of OPTING FOR
A SECOND CHANCE after failing the first round
...

In my case 10 times 3 Gy (The GERMAN PROTOCOL) has helped me now for over 5 years
wirthout relapse ...

Time will tell us, as far as La Jolla will be able to publish the results in the future !

Best to all, Larry

01/15/2011 23:40
LubaM. 
01/15/2011 23:40
LubaM. 
Re: RT Treatment Plan in La Jolla

debrr:
Thanks so much for taking the time to check that out LubaM!! Dr. said I may need a second round after this but we will wait a month to know. Did you have to go back and get rechecked in a month?

Great to know about the 20% urea!! Good to know it's not cheap upfront. I will try to buy it before I go then so I don't have to go hunting for it there.

I will be leaving early Monday morning. My aunt is worried that RT will affect the circulation in my legs. I have strong familial propensity to get blood clots in my legs. Anyone know anything about this? Or should I ask Dr. T when I get there?

Also, with RT treatments, will I be able to enjoy a cocktail or two during treatments in beautiful area???

Debbie
Debbie,
I don't recall Dr. T. saying anything about not having a cocktail during treatments.... check with them... then enjoy !

Yes, I did go back after a month for a recheck. That will give Dr. T. a chance to evaluate your progress and decide if any further treatment is needed. My nodules were fewer and smaller than yours, so no second treatment needed, so far.

Good luck and keep us posted.

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