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BONE SCAN IS CLEAN — BONE SCAN IS CLEAN

This just in… Baruch Hashem. We were just notified by our good friend, our dear engineer behind the scenes at Sloan Kettering, Dr. Michael Zelefsky, that Debbi’s bone scan is clean. Sure the cancer is still in Debbi’s kidney, but at least it has not spread to the bone. Now we have fighting chance to get through this. We are so thankful to all of our family and friends and readers of the blog for their prayers and good wishes as we know that these efforts culminated in this wonderful news. 

In an hour, we are off to meet with our oncologist Dr. Dean Bajorin, where we expect to be formally told these findings and to receive instructions as to the program of chemotherapy with Cisplatin. We have now heard from several oncologists including Dr. Dov Gorshein who put it succintly… “go with the Cisplatin and kick it really hard from the outset… then get the kidney out of there.”

Chemo starts at 1pm.

 

How to leave a comment

Debbi has told me that some readers have had difficulty leaving comments on this blog. While I do not want to discourage people from sending emails directly to Debbi (jan@buckler.com), I do want to provide instructions on the comment feature because the comments become part of the overall sequence of these writings.

Here we go.

Lets say you read one of Debbi’s posts and want to comment. At the bottom of the posting you should see a field saying, No Comments, or some number of comments. Lets say you click this comment field to leave a comment for Debbi. Most likely it will take you to a screen that says that you have to be logged in to comment. (Afterall, this is the internet and we do not want spam showing up among Debbi’s writings).

The words “log in” are a link to the log in window. This is good if you have a username and password. Lets assume that you don’t. So, you should instead press the Register link at the bottom left hand corner of the login window. Please create a username and supply your email address. The blog software will immediately send you a password. 

Now, revisit http://www.debbisjourney.com and press the comment link again. This time when the login screen pops up you will be ready with a username and a password. Successfully logging in will bring you to a user profile page. Here you can fill out the various entry lines…. BUT YOU MUST ENTER YOUR FIRSTNAME AND LASTNAME or you will not be allowed to comment. At the bottom of the form, you may change your password to something that is easier to remember.  Then click on the Update Profile button on the bottom of the page.

Sorry for all the difficulty but now I promise you are able to post a comment… so click on Debbi’s Journey at the top of the form to visit the site. Now any comment link you press will allow you to enter the comment directly and once Debbi approves it, your comment will be displayed. From now on, once you log in, you will be able to comment rapidly.

Again, it is a pain but this is the internet and the blog designers wanted to be sure that people have to register and be known in order to affect the site. 

If there are still questions, I would be happy to walk you through the process… just email me  jan@buckler.com

 

Port Visit

Debbi just came home following surgery to implant the port. What a difference between today’s experience with twilight sleep and her bout with the anesthesia used during the biopsies.  First of all, she made it cross town in 7 minutes, arriving at 7:30am. They were ready and took Debbi immediately into prep, beginning the procedure at 8:30, finishing by 9:15. Shortly thereafter, Debbi called me and sounded amazingly lucid. I had been told that it would be at least until 1pm before she could leave so I was only heading over to York Ave when Debbi was moved to recovery. We talked a few times as my cab waded through cross town traffic. 

I really missed Debbi this morning and could not wait to see her. When I finally arrived, she looked really good. Not groggy at all. She had already talked to each of the kids so all that was left was for her to tell me how she asked the surgeon to adjust the port placement so that she could wear her gown to Aaron & Stephanie’s upcoming wedding. I guess the surgeon has had many such requests and was able to customize the placement. 

We jumped in a black car and were back to the West Side in minutes. Go figure. 30 minutes earlier there was traffic every which way. It was good to get Debbi home quickly so that she can relax for the rest of the day. She seems bright and cheery now that she is home and I am looking forward to spending the next few days with her.

I am hoping that she feels well enough tomorrow to attend services at Shlomo Zalman Zelefsky’s Bar Mitzvah. He is Michael’s son and it would certainly be special to wish Michael and his family a special Mazal Tov after all he has done and continues to do for us. Plus, many friends on the Upper West Side will be there and I think it would be wonderful for Debbi to receive hugs and warm wishes for improvement from these special people.

Holding our breath

So far, we have really only made one choice… to seek assistance and follow the advice of Doctors and Staff at Memorial Sloan Kettering Cancer Center. Now it is time to make a second choice. With the port going in tomorrow, we have one week to decide on the chemo regimen to follow of which we have been told that there is no wrong choice. However, one may prove to be more successful in Debbi’s particular instance and that is, of course, what we care about most. 

Course #1, the standard, calls for 6 three week cycles of Gemcitabine & Cisplatin. Course #2 involves participation in a Phase II clinical research trial of Gemcitabine, Carboplatin, and Bevacizumab. [In case you were interested, Bevacizumab is more commonly referred to as Avastin]. Cisplatin is stronger and more invasive of the kidneys. Avastin is one of a new class of drugs that has been shown to be effective in other cancers and works by denying tumors blood, oxygen and other nutrients needed for their growth. The study is designed to find the effectiveness of Avastin in patients that can not tolerate the additional strength of Cisplatin. Since Debbi is very sensitive to drugs to begin with, we wanted to learn about this alternative. 

We naturally listened carefully to the choices we were given and have been doing some research on line in order to learn more. Certainly, Dr. Bajorin did not pressure us either way. He only wanted to let us know the possibilities. Side effects vary widely. Tomorrow, while Debbi is having the port placed, I will try to contact some oncologists I have met over the years to try to gain some additional insights. Debbi’s comment while reading what I have written so far is… “OMG, this is really serious. Maybe I shouldn’t do anything” commenting on the deleterious nature of many of the side effects.

It is very scary looking forward so the best we can hope for is an immediate notification that the chemo process is working. That is what we have to pray for. That we choose a good chemo regimen and that it quickly works to measurably shrink the tumor in her kidney. I guess the tumor size will become the standard because we have not yet heard about any way to gauge effectiveness via blood tests or metrics away from the kidney.

With another invasive process tomorrow at 9:30, a bone scan and a CT scan on Monday, it still seems that there is much to accomplish, in addition to refining our decision on the chemo regimen, before chemo is to start on Thursday the 10th.

 

What the biopsy said…

In addition to supplying family and friends with important information such as Debbi’s feelings, hopes, fears, and dreams, we are using the blog to record many of the test results for our own records. If you are not interested in this info, please simply scroll forward/backward as necessary.

As you know, biopsies were taken of the right kidney and the left scapula. The diagnosis was:

    1) Kidney Mass, Right Kidney, Biopsy

        Compatible with high grade urothelial carcinoma. The pattern of tumor invasion is unusual in that it appears to have a tubular architecture surrounded by basement membrane-like material in a background of myxoid stroma. This likely represents intratubular spread of the urothelial carcinoma into renal tubules. Immunohistochemical stains are consistent with urothelial carcinoma (CK7, 34BE12, 4A4 Positive; CK20, CD20, CD31 Negative).

    2)  Scapula, Left, Biopsy

         Blood and hematopoietic elements. No carcinoma seen. Multiple levels examined.

 

Reading between the lines, we are very happy that the scapula is not involved even though there was some evidence of cancer in the PET scan. When the biopsy was done on Debbi’s right kidney, the interventional radiologist, Dr. Constantinos T. Sofocleous, was able to place the probe and use the CT scan to verify that the location of the probe was consistent with the location of the mass. However, this verification process was not available for the biopsy of the scapula. Bone is solid and dense. Therefore, the radiologist did his best to use existing scans and multiple screens to try to triangulate the area for the biopsy. Considering that the involved area was approximately the size of the head of a thumbtack, it was difficult to be 100% certain that the biopsy was taken from the exact area. Four sample bone scrapings were taken with the largest one measuring approximately 0.25″. 

Where does this leave us??? Since we are not absolutely sure that there is no involvement outside of the kidney, we must do chemo in an effort to shrink the tumor in the kidney as well as to treat any possible cancer cells that may be traveling through the blood stream (as well as any possible cancer cells in the left scapula). If the chemo is successful in shrinking the tumor, surgery to remove the right kidney (or part of it) becomes possible. 

In the next post, I will try to explain the choices for chemo and how we move forward.