Day 18 After Radiation

It’s been 18 days since the 1^st round of radiation.

The side effects that I might experience are:

·       Tenderness on bottom of foot

·       It will feel like walking on hot pavement

·       Dryness

·       Suntan

So far to date I have not experienced any of these.

Before radiation:

I have a desk job and keep my foot elevated most of the day. Still my ankle and foot would swell. By the end of the work day I would rush home to elevate the foot.

When I had shoes on, I would extent my toes to my shin I could feel the bumps rub on the insole of my shoe. At rest mode, I use to get this tingling sensation and numbness like my foot was falling asleep. I rarely went to the grocery store or ran errands. I walked on the side of my foot careful not to put weight on the arch which would cause pressure to the fibroma and then pain.

After radiation:

I still have a desk job. I do not feel the need to elevate as much as I did. My foot/ankle has swollen 3 to 4 times max. I no longer have this nagging irritating pain in my foot at rest mode.

I have been doing much needed errands without feeling as though I have overdone & I need to rush home to elevate the foot. I still baby my foot and keep errands to a minimum. I do not feel pain while walking. I no longer walk on the side of the foot. I walk normal not feeling any pain. On occasion I feel the bumps down there but it feels more like walking on a soft lump of gel.

The bumps

The fibroma is still there. It does not appear to have shrunk. The fascia still protrudes from the arch of the foot. 

18 days after radiation. I have 2 fibroma's.
The dots on the foot are the permanent tattoo markings

TREATMENT BEGINS

I  flew to New Port Richie Florida a few weeks back. I had a consultation with Dr. Lawrence Hochman of Florida Cancer Affiliates regarding radiotherapy.

I am now back home in Georgia.  I am doing really good. I have no pain at all. I have attached some pictures for you.

The doctor’s office & staff

The office was not fancy by any means. But, It was clean, served free coffee, and a basket of tootsie rolls, other bite size candy for all. The staff, very patient-friendly as well.  Everyone called me by name. They were all kind, courteous and respectful.

Just to touch base briefly on this. My brother’s wife lost her 12 year battle to bone cancer a few years back. My brother accompanied her to 99% of treatment, doctors, & traveled out of state to the bone cancer research center. His comment on the doctor  and the staff was top notch. He told the doctor himself that he spent many days, years at facilities and by far Dr. Hochman excelled. This office also administers chemo to the cancer patients so there is a room full of the recliners that the patients sit in while receiving chemo.

The Doctor

Dr. Lawrence Hochman (he treated me as though I was his only patient),  

I found the doctor to be knowledgeable, pleasant and patient as I asked multiple questions. I saw him 3 times during that week. My consultation was on Monday. To my surprise I was able to begin treatment that same day. I was originally told on the phone that scheduling for the radiation room might be a few weeks after the consultation due to availability. I was prepared to fly home that day. Once it was determined that I was a good candidate for radiation the doctor said he would check to see if the radiation team could work me in. Praise God. They did.  The doctor did the drawing of the diseased area. Then I was introduced to the radiation team. One of the team members mention that they did radiation on quite a few of the hands (DC). The doctor sees all his patients on Tuesday. He wanted to see me again that day just to see if I had additional questions. Of course I did. Then he saw me on Friday just to see how I was doing..

Turns out my brother has DC  on his right hand. I noticed this when I 1^st arrived to Florida. It doesn’t give him any problem. Dr. Hochman looked at his hand (no charge) and confirmed my suspicion to be correct.

On Tuesday when I met with the doctor the 2^nd time. He had an intern with him. He had the intern look at my foot, feel the fibroma and he then explained it to the intern. He did the same with my brothers hand.

What to expect in the radiation room

The team worked fast & smart. They informed me of what they were doing each step of the way.

The head man of the radiation room gave me a permanent tattoo on the bottom of the foot. Looks like little dots. This way I did not have to worry about the marker wearing off.

Then the radiation team made a lead plate. (see picture below)

The plate went in the machine. ( see picture below)

The machine then went against the foot (see picture below) 

The team made sure everything was lined up just so

The team went to work on the computer inputting data.

Once they were ready for me I went back into the room, laid on the machine. The machine moved me into place.

The radiation took about 6 to 10 minutes. Maybe not even that long.

The cost

The consultation is$ 510.00. My insurance is Alliant. They paid all but the $50.00 co-pay. The radiation treatment $11,000.00 Insurance paid all but my $1000.00 deductible. The office will set up 12 month payment plan for the $1000.00 deductible with no interest if you want.

Insurance

Nikki was extremely helpful, she took care of all the insurance details before I ever arrived. She was fast, efficient at getting back to me, returning phone calls, etc. She told me since I would be flying in from out of town to go ahead and make the plane reservations. Once made I was to call her back and she would see to it that I would get in for a consultation. Nikki was a huge asset to my decision. I called her multiple times for multiple questions. Each call she treated me kind, courteous and respectful never once making me feel like I was a bother to her.

I did have BC/BS. My company changed providers July 1^st. I was a bit concerned at that time. I mention this because BC/BS paid all but $60.00 toward the Transdermil Verapamil. Alliant paid all but $35.00.

Being as my  insurance is Georgia I was concerned that it would not cover treatment in another state.. From my understanding it comes down to how the office codes the treatment to the insurance.

Delta airlines

I was prepared to fly home on Monday same day as the consultation. Since it was a medical reason for staying Delta did not charge me to switch the departure day.

Chic Fil A

Every morning we drove from Cape Coral to New Port Richie. On our drive we would stop at the Chic-Fil-A in Clear Water. The staff there was unbelievably friendly. One particular lady stood out. Each day I walked in she called me by name. Thursday I had confided in her that I was on the way for radiotherapy and how thrilled I was at finding hope. She grabbed my hand and spoke words of encouragement. Then Friday when we walked in she stated it was customer appreciation day and because we had on black and white our meal was free. She told me she had been praying for me the night before and felt moved to tell me she believed I would be healed.

Transdermal Verapamil

As I stated in my first post I have been using the Transdermal Verapamil 15% gel (now going on 120 days)

By the advice of my doctor and at P.D.labs I am continuing the transdermal verapamil. This disease has a way of affecting everyone differently, some take to treatment better than others.  I choose not to take any chances. I want to tackle this disease at all angles.

A Special Thanks to Gary Manley & his blog

First off I want to say, Gary I am sorry you have to experience this disease. However, If not for the pain and suffering you encountered from this nasty disease I would not have found treatment. I want to thank you Gary for your consistent persistence in keeping all of us abreast on the new findings. The interviews with the doctors, interviews with the patients, sharing pictures, etc. This comforted me in my decision  every step of the way. It is a godsend that I have met you.

My 2nd round of radiation is scheduled for Sept. 2013.

Radiotherapy in Florida

I have been in touch with two (2) doctors in the Florida area who administer radiotherapy treatment for plantar fibromatosis. They both use the same protocol as the European doctors.

Dr. Lawrence Hochman DO FACRO with Florida Cancer Affiliates, 550 Little Road New Port Richey, FL 34655 (near Tampa) does this treatment. I was in contact with his office a few times this week.

I understand Dr. Hochman has administered this treatment to five (5) Plantar fibroma patients. I asked if any had  an adverse reaction to the radiation and the answer was ‘NO’

I understood that the consultation fee is $510.00 which is pretty much the standard Fee. I learn that my insurance carrier will pay the majority of the consultation fee. My out of pocket expense is $50.00

I have made an appointment to determine if this is the treatment in which I plan to go.

One of the doctors informed me that not everyone was a candidate for this treatment. He stated if the fibroma was deep within the fibers of the fascia the possibility of radiation working was slim. I suppose this is why I have read that its best to have this treatment at the early onset of this disease. If in the 2^nd stage you are considered a good candidate.

Clinical and pathologic studies have classified plantar fibromatosis into three stages:

·         proliferative, = The first stage is described by cellular proliferation

·         involutional = the second stage by nodule formation

·         residual. = the third stage by tissue contraction

My podiatrist told me I was in stage two (2)

Radiotherapy for PF: Trying to find a doctor in the USA

My search continues:
It has been a roller coaster ride to say the least. I have a lead on a Dr. at the University of Miami Miller school of Science. He does the radiotherapy for plantar fibromatosis. I called his office last week for information. Spoke with his assistant. I was given her email address to send questions along with any medical records I have. I am currently waiting on my medical records.

Meanwhile I have at least 20 questions. One very important question: What is the cost for this treatment? This by far needs to be answered just to determine if I am able to pursue this avenue. After I sent the email I called the office to confirm receipt. The assistant forward the email to the doctor. She explained the doctor was at his other location and it would probably be tomorrow before he saw the email. I proceeded to ask her What the cost of the treatment was. She explained there is not a set fee. First one must have a consultation with the doctor. His consultation fee is $560.00, followed with a facility fee of $140.00. A total of $700.00 just to speak with the doctor to find out the cost of the treatment.  Needless to say I was speechless. I'm thinking I have to fly from Atlanta to Miami for $400.00 spend $700.00 for consultation. A total of $1100.00. Just to be able to find out the cost of the actual radiotherapy treatment. What if the cost is in the high thousands? With my being a Georgia resident. Medical insurance will not pay for out of network procedure. Therefore this treatment will be strictly out of pocket. Being low on cash this will not work. I at least need to know some type of price range before I drop $1100.00

My next plan of action:
Perhaps find a radiologist in the Atlanta area that would be willing to contact the doctor in Miami in hopes to get the protocol and administer the radiotherapy treatment to me here. This way there is no travel involved. Okay so that might be a long shot. But, remember we are desperate here. Walking on two (2) marbles on the bottom foot, & having limited funds causes me to think of every avenue I can.
Any suggestions out there???

Has anyone noticed how difficult it can be to get a person in the doctor’s office on the phone to have a real conversation?
Tomorrow I will get up and attempt this again.

My experience with Plantar fibromatosis - ledderhose disease

My name is Patty, I live in Atlanta Georgia. I was diagnosed last year April 2012 with Plantar Fibromatosis, also known as ledderhose disease. I am creating this blog in hopes to find others out there who have this condition. I hope to find someone in the Georgia area. I am in search for podiatrist that has treated this disease and is very familiar with it.

I use to take ballroom dance classes. Two (2) hours once a week. I danced at least 3 times a week 2 to 5 hours at a time. I ran 3 miles, 3 times a week. I was always active. Never overweight.

My story begins Feb. 2012

Last year I ended up with very painful callus on the balls of both feet. I pampered this myself by using over the counter callus pads. Then I noticed a bone sticking out on the side of the top of my left foot. Odd I thought.  Although I was in no pain, I went to a podiatrist to make sure I was okay. I had x-ray. It was determined I  had posterior tibia tendonitis. He put me in a walking boot. About 2 weeks later I noticed 2 bumps protruding from the arch of my foot. This worried me. I had no pain n at that time but I thought they were bones.. In panic mode I went back to the podiatrist. He did an ultra-scan & told me to write down the name 'plantar fibromatosis' go home and search the net for information regarding plantar fibromatosis. He did not tell me anything about what Plantar fibromatotsis was or that is also known as ledderhose disease. So I left his office doing exactly s instructed. To my dismay all information I read was horror story, after horror. No cure, with end result of amputation. I was completely freaked out to say the least. By this time I was on crutches. I searched unsuccessfully for a chat room, forums, anything to be able to contact with someone with this condition. I also thought perhaps I should see an orthopedic verse a podiatrist

I made an appointment with an orthopedic for a 2nd opinion. She said I did not have fibroma. She said it was only scar tissue. Cortisone shot would take care of that. So I had two (2) cortisone shots. One on each lump. She told me to take P.T. for the tendonitis. Within 2 weeks of the shots I was off crutches and went happily about my life. The bumps in the arch was completely gone. The tendonitis in the ankle did not hurt any longer. She advised me to have custom orthotics made. This will help with the tendonitis. Something she said I would have for the rest of my life. $450.00 later I had my orthotics. When I did go dance I would wear tennis shoes with my orthotics in thinking I will never have another problem with my feet. After all I was wearing the orthotics and the bumps on the arch of my foot was only scar tissue. No worried! This was May 2012. I resumed all activity. Hooray I was cured!! However I did not go full force back to dancing. Instead I began hitting the gym and squatting with heavy weight.

But Then it Happened

In Jan. 2013 I noticed the bumps were coming back and I could feel the tingle sensation I would get in the ankle due to the tendonitis. I decided to be pro-active so I went for another cortisone shot. At that time the original doctor who had give me the cortisone shots left the practice. since the bumps returned I had a feeling that I really did have PF. I search the web to find a doctor within the same practice. he studied at Harvard so I assumed he was knowledgeable. I made the appointment with intention of another cortisone shot. This doctor confirmed it was indeed, Plantar fibroma (my worst nightmare). He said, if the 1st round of cortisone shot worked for 9 months then this one would too. He did not explain anything about this condition. He gave me the shot. Told me not to pound on the bottom of the foot. Not to squat for one week. After that resume all activity. I did as instructed. Once I resumed all activity both bumps came back full force. Larger and painful.

By Feb 2013 I was half on and half off crutches. I called multiple podiatrist office always asking the receptionist if this doctor was familiar with PF.  I did find a podiatrist with Emory. I made an appointment. This doctor was very kind. He asked me to tell him everything I knew about PF. So I did. He then said now he will tell me what part is truth and what is myth. He changed my orthotics to a more cushion type. He wrote me a prescription for transdermal verapamil 15% gel. He explained this is a long process but wanted me to go this route. He said if this did not work we could discuss shockwave therapy and/or surgery. He told me the surgery has changed and there is an 80% success rate as long as you remove the entire fascia.  I had already read to many horror stories regarding surgery so I was leery of that statement. I had not heart of the shockwave and what the success rate was on that. Anyway I decided to embark on the transdermal Verapamil 15% gel.

The doctor failed to tell me I must order this compound topical transdermal verapamil 15% gel medication from P.D.Labs located in Texas.

This is the only pharmacy that has the patent on this medication. Since I was unaware of this minor detail I went to a local compound pharmacy. They began to make this medication for me. After the 1st week or so the medication would get very grainy. I spent two (2) months applying counterfeit medication. As it is called when a pharmacy does not have the patent. I then Google this medication and learned about P.D.Labs. I sent my prescription to them. This topical medication is expensive. $250.00 per month. Thank God, I had BC/BS insurance. They paid all but $60.00. My total out of pocket was $69.00 as I had to pay the $9.00 shipping.

I’d like to mention before I embarked on this treatment plan my doctor ordered and ultra-scan (Feb. 2013) to determine the size of my bumps.

I have completed the 1st 90 days. I had 2nd ultra-scan. (June 2013) It was determine that the bumps have shrunk in length and width. However the depth remained the same on one but doubled on the other.

These measurements are in centimeters.

Feb 2013                 June 2013

Figure 1                    Figure 1

Width 1.73               width   .54

Length 2.27              length 1.65

Depth .75                  depth   .75

Feb 2013                June 2013

Figure 2                   Figure 2

Width  1.70              Width  .47

Length  1.32            length .79

Depth .57                 Depth 1.06

Although they have appeared to shrink.

The bottom line:

Am I still in pain?  Not as often. Do I have the quality of life back that this condition has robbed me of? Absolutely Not. The bumps are still noticeably there. I can feel them in my foot at rest mode. I am Not talking about feeling them by the touch of my hand. I can actually feel the sensation of the bumps while in rest mode in my foot. If I walk to much 3 to 4 blocks then my foot and ankle swell. The bumps do appear to somewhat be softer. However the fascia still protrudes from the arch and the bumps are extremely noticeable.  The T.V treatment is a 12 month process. I am however please with the results so far after 90 days of use. So what type of activity do I do now. NONE. I spend most the weekend with foot elevated.  Use my foot to get from point A to point B. I can say that I have been able to walk through the office with no pain and at the end of my work day my ankle / foot is not swollen. I do keep my foot prop up under my desk most all day.

I do plan to continue this treatment as I search for an oncologist near me that does radiotherapy. I am also in search of a new podiatrist. The reason: the podiatrist I have been seeing only offers two (2) other treatment plan. I am not keen on either. I asked his success rate on Shockwave treatment. He was unable to give me an answer. He performed this on very few PF patients. They did not come for a follow up.

Many thanks 

I want to thank Gary Manley for his compassion, kindness, knowledge. His willingness to keep me & everyone abreast on his findings.  His blog has been extremely informative. Gary's story is amazing. His determination on his quest for treatment has allowed him to regain the quality of life he lost for 2+ years. Personally I am thrilled that radiotherapy treatment has helped him. It appears the Eurpoean country is much furhtur advanced than the USA is in treating Plantar fibromatosis.

For the record: When I was 1st diagnosed with Plantar fibromatosis I was never told it was also known as ledderhose disease. So whenever I Google PF and saw things on LD I by passed that information as according to my doctors one said I had scar tissue the other PF.

Goals
One of my goals for this blog is for those out there with this condition, realize although rare as it is, they are not alone.

Another goal: Is to find a doctor in the USA who is abreast on radiotherapy treatment for PF and uses the same protocol as the European doctors. In my research it appears this treatment using the correct protocol has a high rate of putting this disease in remission.

If anyone out there has any treatments that have or have not worked.  Please post on this blog. I welcome your input

Pics of topical transdermal verapamil

2 tubes of topical transdermal
verapamil 15% gel will last 1 month

Applying the correct dose
2 application = 1 dose

must be applied in the morning
and once again in the evening

Apply on the diseased area