Rapidly growing Stage IV squamous cell cancer

I've been reading a lot of posts on this board and I do believe my husband's situation is not normal at all. I understand why all of these doctor's are flabergasted. 

Basically, my husband had a cyst removed from his upper buttock May 2012. They originally felt this was a benign growth and they removed it because it was infected. He had some sort of cyst in this area for 30 years. On examination of the cyst, there were a few squamous cancer cells noted on the outside of the cyst. They just said to keep an eye on it.  A mass grew back in the same area and they removed it with further cancer cells. They went back in and took a wider resection with more cancer cells noted.  This was in August.  After the second surgery, they sent him for a PET scan. This scan showed some activity of the previous surgery (which they felt was just due to the trauma from the surgery) as well as activity in one of the nodes. Biopsy of the node revealed cancer cells. We were due to go to Germany in October, so they said we could wait to have the lymph node removed when we got back. It was barely palpable before we left and very palpable by the time we got back. They assured us it was no big deal to wait that long.

They removed the lymph nodes in the groin, and only one of 11 was affected, but it was a large node. They were positive and felt that there was nothing to worry about. In the meantime, a pimple size lesion was noted at the original incision site. They felt this was no big deal, but within a couple of weeks grew to the size of an apricot. They removed it and it showed cancer again.

At this point (December), the surgeon sent us to see an oncologist. This oncologist did a PET scan and the cancer had spread to his lungs.

We are shocked. He's been under care this whole time and we kept being told that the margins were clear and they felt they got it all. 

He has undergone weeks of radiation, with tumor area from anal region all the way to the groin which is now wide open because of the radiation. He started biotherapy in December and January, and the cancer kept spreading. They finally put him on Carbo and Taxol. He has two treatments of this and develops an infection. Tomorrow he will go in for another treatment of this, and it will make three in a row.

But now he's having seriously hard time breathing. He is barely mobile. Not eating well and constantly in pain.

This is so hard to believe.

The doctors tell us that they have never seen something so aggressive. We took him up to the Cleveland Clinic who felt that his course of therapy was the best one available.

Now what? I just sit here and wait for him to die????

He's 47 years old. We've been married for 23 years and he's my best friend. To say this is heartbreaking doesn't even come close to covering it.

Any ideas?

Kerry

 

 

Comments

  • joelcairo
    joelcairo Member Posts: 9
    HDAC inhibitors

    I don't have any special knowledge of squamous cell carcinoma, but here's my thought... The first thing you need to do is slow the cancer down, decrease its proliferative and invasive potential so that the other treatments have time to do their jobs.

    It has become more and more clear that the progression of cancer isn't simply due to genetic mutation, i.e. the DNA or the "hardware" of the genetic code. Tumors can also program themselves via what is known as epigenetics, mainly via the silencing of tumor suppressor genes. This is more or less what you might call the "software" of the genetic code, and these changes can be reversed. Yes, cancer cells can be seen to change their appearance and behaviour in response to some drugs which are known as HDAC inhibitors and/or demethylating agents. These agents have been shown to slow cancer growth and invasiveness, reduce its resistance to chemotherapy and radiation, etc.

    Some well-known anticancer supplements can accomplish this as part of what they do (curcumin, EGCG, genistein). But honestly, that's a path to follow if you have months to create a robust anticancer environment in your body. My thought is that your husband needs a prescription drug. A couple of drugs that might be worth investigating are Vorinostat and Valproic Acid. As far as I am aware, the additional toxicity would not be that great, although I suppose that partly depends on the dosage. There's also the demethylating agent 5-azacytidine, which I believe does produce side effects.

    If you go into Google Scholar and search on HDAC combined with "squamous cell", or variations on that idea, you'll find numerous studies that have been published on the subject.

    P.S. I made another post here in the Skin Cancer forum a couple of days ago. That should be easy enough to find and contains lots of ideas. But HDAC inhibitors seem like they might provide the most immediate benefit.

     

  • JDDCLAN2
    JDDCLAN2 Member Posts: 2
    I was diagonosed with

    I was diagonosed with prostate cancer last summer and underwent surgery to remove.  Last month I was diagnosed with aggressive growth melanoma in my leg which was remvoed two weeks ago.  A biopsy of my lymph node shows the melanoma has spread and a PET scan shows two spots on my liver.  A friend just referred my to the following web site. Lots of incredible testimonies.  I'm starting the process today.  You may also find it interesting.  :  phkillscancer.com 

     

    God Bless,

    Jerry

  • joelcairo
    joelcairo Member Posts: 9
    JDDCLAN2 said:

    I was diagonosed with

    I was diagonosed with prostate cancer last summer and underwent surgery to remove.  Last month I was diagnosed with aggressive growth melanoma in my leg which was remvoed two weeks ago.  A biopsy of my lymph node shows the melanoma has spread and a PET scan shows two spots on my liver.  A friend just referred my to the following web site. Lots of incredible testimonies.  I'm starting the process today.  You may also find it interesting.  :  phkillscancer.com 

     

    God Bless,

    Jerry

    Be careful

    PH therapy has a great story and a small amount of scientific evidence supporting it. It may have some anticancer effect, but LOTS of things have some anticancer effect. That doesn't mean you can forego medical treatment and rely on them as your sole defense against cancer.

    Also the person behind the website considered his cancer treatment to be a dance he named "I got hit by a rainbow". And he used dowsing to determine the dosage of bicarbonate his body required. Sorry, but it sounds a bit like having Gary Busey as your oncologist.

  • Rakendra
    Rakendra Member Posts: 197 Member
    joelcairo said:

    Be careful

    PH therapy has a great story and a small amount of scientific evidence supporting it. It may have some anticancer effect, but LOTS of things have some anticancer effect. That doesn't mean you can forego medical treatment and rely on them as your sole defense against cancer.

    Also the person behind the website considered his cancer treatment to be a dance he named "I got hit by a rainbow". And he used dowsing to determine the dosage of bicarbonate his body required. Sorry, but it sounds a bit like having Gary Busey as your oncologist.

    baking soda

    I was going to try it for prostate cancer.  It tasted so bad, I could not get it down.  If anyone has any more info, I would apreciate it.  However, I am now only drinking alkaline water. love, Rakendra