Expiration Date

Rewriter said:

My humble opinion
...don't let these words sink in too deeply. Find another oncologist...STAT. Although every situation is different, many women on this board have been through multiple rounds of chemo. Check out clinical trials, read the messages on this board--but, most important, TALK TO A DIFFERENT ONCOLOGIST!

Good luck to you, and PLEASE don't give up hope. Who knows what the future holds?


Hugs,

Jill

Dear Friend - Your Onc does NOT Know
Hi Shiela,

I agree with Jill. Get a different oncologist, immediately.

In Feb. 2008, after a dramatic spread of cancer, I was told, "two months, four months, six months...".

Love you,

Connie

upsofloating said:

Do we have the same doc?
Do we have the same doc? That's the story I received from my gyn-onc. I feel like he considers me a product that has reached the end of its life-cycle. I believe there are more options - i will just have to be careful to balance quality of life with pursuing all possible options.

I'm currently receiving focal radiation treatment for palliative purposes. Meanwhile, i'm investigating options for other opinions. My budget doesn't really have room for travel to major cancer centers, however i'm not really living in a rural area either. My gyn-onc is head of dept at university med ctr. My original gyn-onc moved to another 'prestigious' clinic I had been treated at - and where I was continuously misinformed (or poorly treated) by the med-onc I would have to see if I were to go back there. She over-rode my orig gyn-onc's initial treatment preferences which may have led to a better long-term prognosis. I missed the politics going on at the time to question decision-making.

Meanwhile, I am staying active and continue to pursue a healthy "anti-cancer" lifestyle. In late June, I walked 18 miles in a local Relay for Life and later that day enjoyed a 13-mile sunset bike ride! At the R4L, us survivors received a medallion with the words "I am a survivor." It hangs over my mirror to reinforce my belief every day!

What are your options that you can pursue for other opinions?

Stay open to possibilities!
Annie

gynecologic oncologist?
Sheila,

I am very saddened to read that you have been given an expiration date. DARN IT!!!!

I reread your post and you mentioned oncologist - not GYNECOLOGIC oncologist. If you don't already have this sub-specialist, find one asap. When I was first diagnosed with UPSC - rare and aggressive endometrial cancer - my brother in law (with stomach cancer) talked to his oncologist about my diagnosis and that doc had not even heard of UPSC!

We need a gyn-onc who should have the expertise we need. Hopefully your current doc is unaware of options for you.

Did you have a functional profile (assay) of your tissue? This would help pinpoint the right chemo for you. If not done yet, maybe this test is still an option.

Keep us posted, please. My prayers and best wishes go to you. Mary Ann

Shiela, my apologies if I
Shiela, my apologies if I sounded flippant or unsympathetic to you. Your post hit quite close to home as my last gyn-onc visit to discuss new issues resulted in his quick disposition of me to palliative radiation with an 'about out of chemo options' comment. Needless to say this has been a little hard to deal with.

I too am concerned as to what led your onc to make this comment, what sudden changes have occurred to change chronic care options? I think my gyn-onc's concern may be that my bone marrow is getting too hammered to continue to tolerate chemo.

Please let us know what is happening - I am concerned about you.
Annie

Shiela
So, here's what I'm thinking. Again I have no medical anything, so this is just what I might consider were i in your position.

Since it appears that the cancers are contained in the abdominal area, except for the vaginal one, there is a treatment where chemo is heated and applied to the abdominal cavity. I believe that Diane had this done. They can also do some sort of scraping. Someone else will know about that.

The other thing that you didn't address is the manner in which your tumors are being detected, or did I miss that part.

I haven't had any formal type of treatment and have done a bit of research on cancers causes and needs. Having said that, again were it me in your position, I would try to do all I could to starve my cancer's basic needs. No sugar. None unless I were also a diabetic. You haven't been around for the acid alkaline discussion but try to eat foods that are on the alkaline side of the food chart. Google acid alkaline foods chart and you'll have many choices. I would eat no meats of any kind. I would eat fresh fruits and veggies as close to organic as I could get them. I would drink green tea with lemon added after it had brewed for 30 minutes. don't bother with bottled teas. I would eat raw ginger slices, just take a slice and nibble. Since your cancer is the type it is you should have both estrogen and progesterone receptors on the cancer cells, so stay away from meat again, milk and coffee.

There's a whole passel of posts regarding turmeric and black pepper and olive oil or you can google the combo.

Also, stay away from foods containing iron and copper. Salt is not your friend nor is fat. Potassium is something that can keep cancer in check according to what I've read. another thing that cancer doesn't like at all is heat. It's seldom talked about but I have some reference to it in papers I've read. I know my temperature is usually 96. something. Saunas might be a good idea. Concord grapes the very first thing in the morning were something that I did religiously in the first few months. followed by lemon water. Only organic lemons. Strawberries and raspberries are also getting some good press. Exercise if you can.

And because Cancer is stymied by oxygen, there is also evidence and common sense that frequent deep breathing throughout the day can be of benefit.

Jana has some further things that have worked for her.

Again this is just what I would do and what I have done, except for the heated chemo.

I honestly don't believe anybody has to die from cancer. You have to be willing to do whatever and have not only hope, but a firm belief that the things you are doing will keep you alive. Do not dilly dally. Don't think about it all for a few days. None of this will hurt you unless you have some underlying condition other than the cancer. It's just food, tea, breathing and exercise.

also a couple of thoughts about the trial.
One is they don't usually let people in trials that they don't think have a reasonable chance of making them look good by surviving the trial and getting well. so someone thought you were a good risk. I would too, considering you were Stage 1 Grade 1.

there are different levels of trials A Phase l trial is basically, they have no real idea if things will work or not. Once you get around to Phase lll they are just checking effectiveness. Get a different doctor post haste. Yours has completely given up on you.

I remember when my dad got cancer and I did some research, I didn't really know anything but I had read that exercise and sunlight were thought to help some. I recall bringing this up in front of the doctor at a visit. This actually made my dad smile, this thought that there might be something he could do to help himself instead of feeling helpless and out of control of his life. The doctor's response was he could try whatever he wanted but it wasn't going to make any difference, he was going to be gone soon regardless. I was infuriated. I'm Sicilian from New York City and let me tell you I don't know if I have ever been so mad. I asked very nicely if I could see the doctor out in the hall for a second. We went out and I hit him. I said right in his smarmy little face--How dare you take away my father's hope. How dare you!!!!!!!!!!

And I've felt that way ever since. Let no one ever take your hope away. and the more you can do to make yourself believe that there are things you can do, the more your mind and body will believe you and begin to mend.

sorry for the trip down memory lane.

My father did die. but it was a year later on a projection of weeks. And at the time I knew nothing of what I know now. Had I known then what I know now, I don't think my dad would have died. There is always hope.

Hang in there.

Hope and following my own advice are the only things that are keeping me alive. It's been over three and half years since I was diagnosed with Uterine papillary serous with two 1.5 ish cm lymph nodes that no one bothered to take out because they thought I had the typical uterine cancer and that I would be getting chemo anyway.

They forgot to ask me if I was interested in chemo.
claudia

I reread your post and found the CT scan info.
How big are the tumors?? Can you get a PET scan which will show tumors larger than 1cm.

Also after rereading your post, I'm thinking about taking your doctor out in the hall.

Why not try a second opinion?
I believe there are other treatments available, Shiela. You might want to see about getting a second opinion. It might be wise to find a doctor that is willing to try to focus on the positive. I think what your doctor said sounds a little off. He may be quoting statistics. Whatever the case, I believe you have options. Others have written with lots of advice so I will only add that I hope the best for you and keep posting here. Norma

kkstef said:

Sheila
I too, am appalled at how your doctor has responded and I strongly suggest seeing a new GYN-Oncologist. I believe there are options for you! I don't have anything to add to the advice the women have already offered you other than to let you know we are all here for you and wanting to help in any way we can!

Big hugs, Karen

Shiela, a few questions?

Shiela, do you mind a few more questions? These will help me complete some research on your behalf. Claudia is the queen or research, but maybe I can find some relevant information, too.

--When were you diagnosed with stage 1, grade 1 endometrial cancer?

--Can I assume that at the time of your original diagnosis, you were told that no further treatment was necessary?

--Did you have lymph nodes removed during your hysterectomy?

--When did your tumors begin to develop? Did you immediately begin treatment?

--Did your doctor actually say that you were running out of chemo options or that treatment simply wasn't working?

From what you've shared so far, I get the idea that you haven't had too many different types of treatment. Rather, the drugs have made you sick and weak. Again, I would suggest talking to another GYNE-oncologist.

We're with you, Shiela.

Jill

Shiela said:

Claudia,
I was doing well in
Claudia,

I was doing well in February but my last remaining tumor wasn't responding to chemo....carblotin. My oncologist wanted me to try a clinical trial, which took me about three months to get into. During that time I wasn't receiving chemo. My immediate reaction to the trial drugs was bad, fevers, weakness, but my doctor insisted it was the best treatment for me. I received a CAT scan at the end of June to assess my response to the trial drugs and was told I had a tumor near my spleen, a few small tumors by my colon and
another in the upper right quadrant of my abdomen. I had also started to have vaginal bleeding and a pelvic exam revealed a tumor in my upper vagina. I was devastated to hear this news....how quickly this new cancer had spread.

I asked what we could do next to get the cancer in check and he said there weren't many options left for me. We could try Topecan, which I'm on now, but he doubted I had a good
chance for a favorable response. I asked him about other chemos and he said they were unlikely to help.

He said my symptoms of fevers, lack of appetite and energy were concerning and led him to believe that the cancer was gaining ground and eventually he wouldn't be able to contain it.

My original cancer is endometrial, stage one, grade one, which has a very low recurrance
rate.

I've spent the last few days trying to find a way to deal with this.

Thanks for your concern and any light you can shed on the situation.

Best,

Shiela

Shiela, do you mind a few more questions?
See below.

Shiela
Sending you prayers for keeping the fight going...

Where are you being treated....sometimes different parts of the country/World provide different solutions and innovations...

Laurie

p.s. we are all here for you!

Shiela said:

Annie,
Your comments didn't
Annie,

Your comments didn't sound unsympathetic....it sounds as if we've had similar experiences.

My oncologist has always been concerned about the balance between treatment and maintaining
a good quality of life. I think he's concerned that my body isn't able to handle treatment
very well as we go along.

The sudden changes are the spread of the cancer that I mentioned in my post above to Claudia. I know it's not good, but the cancer isn't in any vital organs and it seems there should still be options.

What is palliative radiation and is it helping you?

Shiela

Some Other Ideas Sheila
I did the HIPEC procedure for cancer spread to my peritoneum. It worked as I have never had an abdominal recurrance but I do have a tumor in the liver. I am on chemo now. You can google HIPEC. You have to take four chemo's first and then a couple afterward. But a better option for you might be peritoneal chemo. They inject the chemo into a tube into the abdominal cavity and then it is more sensitive. I think you should inquire about this.
Don't forget about good old megace which has kept some women going to years; you take it orally.

Radiation might help and then there is proton radiation too. I see alot of options for you but you need to make appts and start the running again.

Love you Warrior,
Diane