*long post*

Many breast cancer patients who survive past major treatment, yet require ongoing maintenance treatment, are given hormone blocking medications.

This is because some types of breast cancer are hormone reactive.  My types (there were two) were hormone reactive, so I have been on hormone blockers now for a year.

Unfortunately, the hormone blocker alone proved inadequate after 6 months off of chemo (the cancer in the liver woke up again), so chemo was added back as a "lighter" oral pill.  There are far fewer side effects from this type of chemo, yet is has been shown to prevent the spread of cancer cells.

So...in October, in conjunction with the introduction of the new chemo pill, the hormone blocker was changed from a pill, to a different drug administered by injection, which studies had shown to have a high survival success rate.

Yes, we were back in survival war again.

After a couple of months on that regime, SOMETHING started wreaking havoc with my soft tissue, causing awful muscle spasming in my legs and feet, and tendon pain and damage in my hands and wrists.

I have not been able to do any massage therapy for months because of the pain, and had lost my ability to do almost ANY task at all without suffering pain.  Think about all of the things you do with your hands....even the small things.  Yeah.

I got cortisone shots in December, but the effects were temporary.

In the meantime, however, I did some research, and found lots of evidence that the injectable hormone blocking drug was almost assuredly the cause of these life-disrupting side effects.

Then, there was also the fact that the monthly phone calls I have to make to the chemo drug company always involved them asking me if I was being treated with the injectable hormone blocking drug, OR with the oral drug that I USED TO TAKE.

The next time I saw my doctor (January), I explained to him that the leg and foot cramping, and the wrist pain, were unacceptable.  

He was looking like he was going to put me back on IV chemo, when I told him that I had done some research, and had found that the injection drug was PROBABLY causing my issues, AND I told him about how the chemo drug company was always asking me about which "companion" drug I was being treated with. 

I asked if it was possible to just switch the hormone blocker.

He rubbed his chin, then left the exam room.  He went to his computer, and verified that the studies done with the first hormone blocker were just as successful (though done on fewer patients) as the studies done with the injectable drug...... so he took me OFF of the injection, and put me back on the first drug!

I did NOT get the injections that day, and went home and pulled the bottle of pills out of the back of the cabinet and started on them again.

The muscle cramping stopped a few days after the injectable drug was out of my system.  I've been able to sleep through most nights without one cramp!

Unfortunately, however, the wrist pain continued, and worsened, to the point of my not being able to use my hands for ANYTHING without pain, sometimes bringing me to tears.

I put a call in to the orthopedist, and explained what was going on.  I explained that the drug that started this has been removed from my protocol, and was now three months out of my system....and that my hope was that he would agree to do more cortisone injections before we started talking about surgical intervention.

I had my cortisone shots on Thursday.  They were incredibly painful. Worse than the ones in December. I made it through the process itself without crying, but when I got in the car, I burst into tears.  The pain was mind blowing.  Not as bad as my biopsies, but BAD.

By the next morning, though, I could feel a difference, and by last night, I was able to go grocery shopping and not drop anything, and was able to reach around and scratch my own back!!!

Here's hoping that the positive effects of the cortisone, which have started to be noticeable, will be complete and permanent this time!!  

 EDIT:  Maybe I can play my guitar again soon!!!!!!

 Antigone wrote: 
Never mind, I used my Google finger.

 ScottFromWyoming wrote: 
HUH??

 Antigone wrote: 
That's good, but at the same time, someone who's done thousands might not be so interested in fixing what ain't broke. I tried to find something more current that has better results; but that's not the case here. All systems go! IANAD.

 ScottFromWyoming wrote: 
And my doctor has done (as he put it) thousands of this procedure. That doesn't mean I am not scared/anxious about it but ...

 Antigone wrote: 
Of the options listed, the LRTI seems to be the way to go. Other things I found all agree.

Ligament Reconstruction and Tendon Interposition (LRTI)

In use for more than 40 years, LRTI is the most commonly performed surgery for thumb arthritis. The arthritic joint surfaces are removed and replaced with a cushion of tissue that keeps the bones separated. To accomplish this, surgeons remove all or part of the trapezium bone in the wrist.

A nearby tendon is detached at one end and then passed through a hole drilled in the thumb metacarpal. The remaining tendon is rolled like an anchovy and placed into the space where the bone was removed. Surgeons can also use artificial “anchovies” that eliminate the need to move a tendon.

Who can benefit: Adults with moderate to severe arthritis with pain and difficulty pinching or gripping.

Pros: Removing the entire trapezium eliminates the possibility of arthritis returning, and, according to Dr. Ruch, LRTI has a 96 percent success rate. “Most patients achieve complete pain relief and mobility equal to that of a healthy thumb, with results lasting at least 15 to 20 years,” he says.

Cons: LRTI has a lengthy and sometimes painful recovery and rehabilitation period, including at least four weeks of wearing a thumb cast. Patients also may experience decreased pinch strength, making it difficult to grasp and hold objects. LRTI also noticeably shortens the thumb. When the entire trapezium is removed, there are few repair options if symptoms persist after surgery.

 

From this site.

 DaveInVA wrote: 

Wow. Dave, I had no idea you were dealing with this. Miamizsun's link might be very helpful: I know a lot of research is being done on diseases of the eye that affect the retina, including retinitis pigmentosa and macular degeneration. 

I don't know if either of these links would help you but I hope they give you some leads and some hope:

https://www.technologyreview.com/s/602625/gene-therapy-in-us-is-on-track-for-approval-as-early-as-next-year/

 " Spark Therapeutics is within striking distance of a landmark green light from the FDA for its treatment for certain forms of blindness, known as inherited retinal dystrophies."


https://www.technologyreview.com/s/603561/companies-plan-tests-of-optogenetic-goggles-to-restore-sight/

"Two startup companies say they plan to start clinical trials to treat blindness by combining an emerging technology called optogenetics with high-tech goggles that can beam light into the eye.

The companies, GenSight Biologics of Paris and Bionic Sight, a startup out of Weill Cornell Medical College in New York, both say a combination of wearable electronics and gene therapy has a chance to restore vision by re-creating the retina’s ability to sense light.

Both companies are aiming to help patients with a degenerative eye disease called retinitis pigmentosa, which destroys light-sensing cells in the retina. If the approach works, it could in theory be used to treat any type of retinal disease that involves the loss of these cells, called photoreceptors."

One of the worst things that could have happened to the eyeglass bizness is well underway.

The Luxottica Essilor Mega-Merger: Company Overviews

We, in the industry have been dreading this for many years.  Now the largest lens company in the world is merging with the largest frame company in the world, which also owns one of the largest eye insurance plans in the US, Eyemed.  This may be the fatal blow to small independent operations.  How do you compete with the company that now makes both the frames and lenses that you sell and has their own stores and in house insurance company ?  The other larger US insurance outfit VSP now also has its own lenses, frames and stores.

Rollerball has arrived to my profession ... sigh ... glad I'm old ... sigh ... the consumer will lose, too. 

 miamizsun wrote: 
Bookmarked !

That is really cool and good to know for what I do.  Anything Gordon Gund is associated with is the real deal.  A hometown hero as the former long term owner of the Cavs.  His is a great story in itself.

 miamizsun wrote: 
Thanks, I will definitely check them out....

 DaveInVA wrote: 
dave i'd contact this organization

http://www.blindness.org/blog/index.php/category/research/stem-cell/

you may qualify for study or treatment

especially if you're an extreme case

regards

 miamizsun wrote:
dave i'm sorry to hear this

if you pm me or post the details i'd be happy to do some research for you

and would you be open to something cutting edge or experimental?

peace

  Some details:
This started about 20 years ago when I had an arterial spasm likely caused by the job stress I was under at the time. The Doc called the arterial spasm a small stroke. It was like crimping a garden hose and releasing it resulting in a momentary high bp in the small vessels feeding the retinas in my eyes. This blew out hundreds of them causing leaks. The vision damage was immediately noticeable in both eyes at the same time. These vessels are to small for red corpuscles to fit through so scabs can't form to seal them. The plasma leaks contain high protein which over time causes the layers of the retina to delaminate and separate causing permanent vision problems and making the eyes very fragile. Having the cataract surgery seems to have disturbed things enough to cause multiple delaminations to occur in both eyes. This would have happened sooner or later anyways but it might have been years later. The Doc held off doing the cataract surgery until after a full year of no noticeable activity occurred hoping it would be stable enough to take the abuse of the surgery.
I'd be open to about anything. Usually they use laser cauterization to seal the leaks before more damage happens but every time they fire the laser it causes small dead spots so its only practical if you only have a few leaks and not hundreds.

 DaveInVA wrote:
dave i'm sorry to hear this

if you pm me or post the details i'd be happy to do some research for you

and would you be open to something cutting edge or experimental?

peace

 kurtster wrote: 

My vision lasted longer than I was originally told. When this happened I was living in Petersburg and was seeing a eye doc from the University of Richmond. He did a Intravenous Fluorescein with his class watching and he told them what they were seeing was not typical and is the worst case you will ever see. He then told me I'd be legally blind by the time I was 55. So its just taking longer than he thought.

 DaveInVA wrote: 
  The cataracts uncorrected would have had the same net effect.  Diabetes is the one disease not of the eye that has the most profound effect on the eye.  At least you don't have that to worry about.  There are some eye vitamins that might help slow things down, but surely won't hurt.

Time for vigorous eye protection from the sun with polaroid lenses a must for bright outdoor days, even if its the fit over type.  I would recommend brown for the blue blocking properties and the higher contrast they offer.

These may be of help in other occasions such as indoors or cloudy days.  And they make a wide variety of decent fit overs as they are called.  You should be able to find them at most optical shops.  You do need to try them on to make sure they fit properly.  Ask for them by name.

Cocoons 

If they help. you can get your regular clear lenses tinted that color for full time use. There are actually two standard tint colors for this purpose.  Do check with your doctor before the vitamins first though.  

HTH 

 DaveInVA wrote: 
sorry to hear that Dave.. I often wonder what I would do in worst-case scenarios (guess a lot of us do).. I would find it really hard not being able to read, share thoughts using a visual medium. To be honest, that would freak me out. I hope you find a way to still get what you need, what you want, despite it all.

 black321 wrote: 
Its all I can do. I can't make out detail in peoples faces anymore  in normal lighting.

 DaveInVA wrote: 
Sorry to hear that, but try to enjoy what you still have.

An Update to my last post here.

I saw a specialist eye doc from Duke University yesterday. My left eye had also started failing in the past 2 weeks. This was the soonest he could see me as he has been on vacation for a month.
Good news the "cyst" is gone. It was a bubble in the retina caused by fluid getting under it and pushing it up and it resolved on its own. Was likely caused by the abuse the eye got during cataract surgery as the Doc had a hard time centering the new lens. These bubbles happen about 15% of the time after cataract surgery and usually self resolve. The bad news is my vision got even worse instead of better and both eyes are now as bad as before the cataract surgery, So he did a dye scan. Turns out my vision is failing because I have actual dead spots in my eyes. The right eye its in the center of vision, a very large portion of it. My left eye its in the upper left vision mostly. This was likely caused when the cataract surgery disturbed "fragile" areas originally caused by a stroke I had about 20 years ago. The worse news is the scans show many other areas decaying. The even worse news it there is nothing they can do about it except hope it takes a long time for the other areas to die out. The Doc said in his 38 years in this business he has never seen damage as bad as what I have. This is similar damage to what some diabetics get except it rarely happens in both eyes or to this extent. He said there are "hundreds" of dying areas in both eyes.  I am not diabetic (yet anyways) and I originally developed eye problems in both eyes the same day 20 years ago after a small stroke. Before the cataract surgery this same Doc thought this had stabilized and after a further year of no more activity he ok'd the cataract surgery. He now says this would have happened anyways eventually even without the cataract surgery but it might have taken a lot longer to happen. I guess my eyes were just to fragile from the previous damage. But I was already at a point where my vision could have kept me from renewing my drivers license. So now its back there again and will only get worse and never will get better again. What fun.