13 replies to this topic

[Teresabourgeois]

Im so sad.  I had a biopsy of a cyst on the cartlidge of my ear.  It had been there at least 4 months.  Well, its a

Squamous cell carcinoma.  I'm just freaking because I've read that the ear is the hardest place to deal with this and the most likely to

Spread to lymph nodes.  Also, I was never in the sun because I have mixed connective disease.  I've read the people with compromised

Immunes can get these cancers and are more likely to spread.  I'm just saying that WE the people of CML should not assume that

Bumps or nothing to worry about.  I'm worried I waited to long.  This cancer can be fatal.  I'm waiting on MD Anderson to refer me and I'll have a surgical procedure called Mohs.  Yuggggggggggggg

[Susan61]

Hi Teresa:  So sorry your having trouble, but do not think Fatal right away.  CML used to be considered Fatal, and look at what is done now.   I am sure MD Anderson will refer you to the best for this problem.  I am not up on this type of cancer, therefore, I cannot comment on what you should do.  I will keep you in my prayers that this turns out not to be as severe as you think.  Just keep in mind that cancer of any kind is treated in such unbelievable ways now then it used to be.

Susan

[Teresabourgeois]

Thank you Susan . I know that I will get in a better place soon.  I was just having my pity party.  I've had CML for 18 months and my mind had finally adjusted to realizing that I would be ok from it.  Somedays I don't even remember CML.  I'm praying I will get an appointment soon and get to talk to a Dr. That will ease my mind. I guess I'm vain too because I'm sad that I will loose part of my ear.  I guess I will give my earrings to my friends....see a Lil joke

[alexamay09]

Hi Teresa

Try not to worry too much.  I know a little of how you are feeling as I had breast cancer diagnosed in 2009 and then CML a few weeks ago.  It seems so unlucky.  Take care and let us know how you get on.

alex

xx

[nelnorm]

Hi, Teresa,

I have had CML since February 2012.  ...... on Gleevec.  Started out on 400mg and then reduced to 300mg due to severe rash.  Been on 300mg since August 16.  The rash has been diagnosed as invasive squamous cell ca upon biopsy of some of the lesions.   Yesterday, I was back at MDA  for more incisions, scrapings and biopsies.  I am being seen by an onc dermatologist at MDA.  My Leukemia doc is there too. But, they are puzzled and say that they have not seen this before with Gleevec.  They want to put me on a medication that has some serious side effects and I am not ready for that .  I would rather watch and remove rather than take this other medicine that must be monitored all the time .... very stressful.   Are you going to a onc dermatologist?  Please let me know if you have any other spots.  I have had two positive and many were removed yesterday and am awaiting the results. Let me know how you are doing.

Norm

[Teresabourgeois]

Norm,

I see Dr. OBrien at MDANDERSON for leukemia.  Do you go to Houston?  I am waiting on an appointment for dermatology so I'm not sure who they are referring me too.  I have had serious rash issues since I started Sprycel.  My local dermatologist DX the rash as keratosis pilaris.  I only had my ear biopsied because there was a pretty large cyst.  I've read that squamous cell cancers on the head are more serious because of being closest to lymph nodes.  Did you have yours removed by Mohs procedure?  And did they have mention checking to see if it was in your nodes? I hope you get good news.  I can't blame you for not wanting to get on more medicine.  I'll let you know once I see MD

Teresa

[Teresabourgeois]

WOW!  I'm sorry that your under siege too

[nelnorm]

Sorry  , Teresa that I did not get back to you sooner.    The Leukemia doc is Dr. Verstovsek  and the onc/dermatologist is Dr. Chon.   Yes, they are at MD Houston.  I had about 25 places frozen and 4 cut out this time ...  All were invasive squamous cell.  I have decided not to take the soriatane.... too many side effects. So, I will just go about every month and have the places cut out.  I hope you get Dr. Chon.  She sure is sweet and knowledgeable .  Her Resident is Dr. Cathy Riggle.  We really , really like her.  She takes sooooo much time with us and when she calls us on the phone, she may talk for 30 min.  you do not find a doctor like that very often. I would not worry so much about the cancer just because it is on the ear.   My brother in law had an unbelievable melanoma on his cheek.  We just thought he would die for sure.... That has been so many years ago and he is fine.   My wife and I will say a prayer for you.  Let us know when you have the appointment.... who knows ?  We may be there at the same time.

Norm

[nelnorm]

Billie,

were the ones your doc removed squamous cell ca? 

Norm

[Teresabourgeois]

Norm,

I soooo not happy with MD right now.  After two weeks of them saying that they did not get the faxed biopsy reports they then asked for the actual slides.  They were sent over night yesterday and signed for.  They say that they don't have them. They will not even make me an appointment until they have the slides.  I sure hope that they have not lost the slides.  So I'm just waiting.  I think it is easier to get an appointment at MD when you aren't already a patient.  I've been putting holy water on it everyday and it is better   Thank you for the prayers.  I hope I get the Dr. you speak about. 

[Teresabourgeois]

Well I didn't loose my whole ear, just a chunk from the squamous cell.  I just want to tell everyone here to be overly attentive to any new bumps!  We are not like other people and skin cancer comes with a weekend immune.  I have about 20 stitches and healing ok.  Ready for whatever comes next.