"Anal cancer, part deux." Part 2.

Ouch_Ouch_Ouch

The past --- I was treated for anal cancer in 2014 - 30 radiation doses and 2 boluses of mitomycin & 5-FU via medi-port on day 1 and what would have been day 28 if I'd been able to go straight through. I was very sick and had a lot of gaps in treatment both because of the radiation and the neutropenic fevers. I was hospitalized x 3 (the last stay was 10 days) for IV antibiotics and 2 units of platelets and 2 units blood. My white count spent some time at 0; my platelets were lower than 15,000. (My platelets have never gone back into the "normal" range.) 

 

The present --- Four years later, a follow-up CT scan showed metastisis. A PET scan showed a neoplasm. My local oncologist insisted on a colonoscopy that showed nothing except a fried anal canal. Therefore, the doc said I didn't have cancer after all; the scans were picking up scar tissue. Besides, it's 4 years later and the cancer wouldn't wait that long. Don't worry!

 

I have no confidence in her, so went to Memorial Sloan Kettering Cancer Center for evaluation. The doc presented "my case" to the evaluation group. They felt that I did, indeed, have cancer. The radiation oncologist (Christopher Crane) said that I have a node just north of the irradiated field where the cancer had spread undetected until now. It's rare, but he's seen it a few times in his career. He felt so sure of the diagnosis that he thought a biopsy was a waste of time. I was scheduled for 27 radiation doses and he didn't expect and necrotic black skin. The only iffy thing is that it's snugged up next to my large intestine. Fingers crossed for the accuracy of the radiation machine's aim.

 

When I met the medical oncologist (Armin Shahrokni) and told him all I went through, he just kept shaking his head and saying, "Why didn't you come here first? We would never have let any of that happen to you." He further said he would never give a human being mitomycin - it's way too toxic. Cisplatinin is just as bad, if not more so. So, I'm getting Xeloda 1000mg BID on the days when I have radiation. (I screwed up and forgot that I shouldn't take it on one weekend.)

 

My tummy skin is perfectly fine, not even red. I am only occasionally mildly nauseated, but mostly disinterested in eating, so I force myself - can't take Xeloda on an empty stomach. I have some light gagging with certain odors, but it's nowhere near as bad as last time. I get tired, but I'm easily able to care for myself. I'm staying in NYC for the duration. I am homesick, though. My husband can't join me because he has to take care of The Uncle (dementia, diapers, diabetes, etc). The guy is 93 now and just keeps ticking.

 

A break in the daily radiation routine --- Yesterday, I was sitting in the main building's main lobby just outside the gift shop, when Steven Buscemi sat down next to me! I kept my cool. (I met John Waters once in a movie lobby and was a complete jibbering idiot; I didn't want to recreate the John Waters incident.) He was joined by a woman who bought a card and they spoke while she filled it out. When I heard his voice, I KNEW it has Steve. They took the card and flowers up the elevator, presumeably to visit a patient.

mp327

Ouch

I am so sorry you have had to go into the ring again.  I don't know which would be worse--going into this the first time knowing not at all what to expect, or going into it for a second time knowing what lies ahead, based on previous experience.  I'm also sorry that you are in NYC by yourself.  I just don't know if I could handle that or not.  However, you impress me as a very strong person and I truly believe you will get through this.  I hope your side effects are the least minimal possible and that your medical team will be there whenever you need them.  Take good care and know that I send positive thoughts and prayers for you!

eihtak

Ouch_Ouch_Ouch...

Hi and a BIG hug to you!

We are usually at the mercy of our doctors and supposed to be able to trust that they are all equally educated and have our best interest in mind...sad to hear stories that prove that is not always the way it is!

My first metastasis was at the 4 year post treatment mark as well. It was in my lung and I was given Cisplatin following surgery to remove the lobe in which the mass was contained. (Xeloda was considered but right now I don't remember the reason for not going that route??? I'll need to check on that) Fast forward 3 MORE years after that, and I am now dealing with mets AGAIN to an area on the edge of the remaining lobe. For this I am receiving SBRT millimeter precision radiation (more often used on lung areas)...so far so good but still have at least 3 more treatments!

I'm so sorry that your husband can't be with you but hopefully technology keeps you connected. I remember eating being such a struggle when on chemo and would often just take one bite of yogurt and a cracker every so often throughout the day just to keep something consistent in my belly. I will most surely be thinking of you and praying for strength as you proceed...please stay in touch so we can "be there" with you even if virtual it is!

katheryn

lizdeli

Ouch so sorry to hear

I am so sorry to hear that you have to go through this again.  Dr. Christopher Crane was my radiologist at MD Anderson when I was treated for Stage III nine years ago. He moved over to Sloan Kettering a couple of years ago. MDA’s loss but Sloan’s gain. He is an awesome doctor. I had him, Dr. Eng and Dr. Chang. The A team. You are in good hands. Everything he told me from day one turned out to be true. I had Cisplatin and 5FU. It’s MDA’s protocol. From what I recall they said Cisplatin was less toxic on the kidneys.

I wish you strength and healing!

Liz

Ouch_Ouch_Ouch

lizdeli said:

Ouch so sorry to hear

I am so sorry to hear that you have to go through this again.  Dr. Christopher Crane was my radiologist at MD Anderson when I was treated for Stage III nine years ago. He moved over to Sloan Kettering a couple of years ago. MDA’s loss but Sloan’s gain. He is an awesome doctor. I had him, Dr. Eng and Dr. Chang. The A team. You are in good hands. Everything he told me from day one turned out to be true. I had Cisplatin and 5FU. It’s MDA’s protocol. From what I recall they said Cisplatin was less toxic on the kidneys.

I wish you strength and healing!

Liz

Say, "Hello" for you?

I am going to see Dr Crane tomorrow (Wednesday the 5th). Do you want me to say, "Hello!" for you? He's kinda odd - he always looks like he has that 'deer in the headlights' look. Maybe I intimidate him somehow. Are you "Liz Deli"? How very funny!

Ouch_Ouch_Ouch

New staging category.

I see that a new staging category has been added to anal cancer - stage 3c. I would have been a 3c if it had existed in 2014.

lizdeli

Dr. Crane

Thanks! I doubt he will remember me since it has been years. My last name is Deligiannis. Thus you can see why I use Deli. If you see him just tell him a patient from 9 years ago is doing good. He does have that look you described. But he is good st what he does. I hope all goes well for you. 

Liz