Uterine Papillary Serous Carcinoma (UPSC): any others here???

deanna14 said:

Neuropathy
I just found this post on the "long term side effects of treatment board." I thought it was pretty educational, just thought I would share. Many of the posts talk about equal amounts of B vitamins to combat neuropathy.


Neuropathy is a problem that sometimes occurs with chemotherapy treatment. It's not all that rare, especially frequent in patients older than 65 years of age. It is damage to the nerves. It can occur from some chemotherapy drugs used in conventional cancer treatment.

There are three major groups of nerves in the human body, the peripheral nerves that carry information to and from the limbs, the nerves that supply the bowels and other internal organs, and the nerves of the head which connect to the ears, eyes, taste buds, etc. Nerves in any or all of these major groups can be affected by certain chemotherapy drugs.

Nerves are vulnerable to many kinds of damage. They can be damaged by certain cancers. This may be caused by the cancer cells producing a particular kind of biological agent that interferes with the function of the nerves. Sometimes, they can be damaged by drugs used in chemotherapy treatment. The chemotherapy drugs that most likely cause nerve damage are the vinca alkaloids(vincristine, vindesine and vinblastine), platinum drugs(cisplatinum, carboplatinum) and the taxanes(taxol, taxotere). These drugs have the potential of interfering with nerve function.

You may notice symptoms in different areas of your body depending on which groups of nerves are affected. Symptoms in the hands and feet happen when peripheral nerve damage happens and are not rare with vinca alkaloids. The first sign of nerve damage is usually a feeling of tingling and numbness like what you experience when your foot goes to sleep after you've been sitting for a long time in an uncomfortable position. If the problem progresses further, it often produces weakness of the muscles, resulting in loss of strength at the wrist or the ankle. You will notice difficulty in doing up buttons and picking up coins. You may notice that you will tend to trip while walking up stairs or dragging your feet and tend to have a wide-based gait. In severe cases, the weakness may be so severe that you will need a wheelchair.

When the nerves in the bowel are affected, constipation is the earliest sign. In a few people, the abdomen becomes bloated with a distended bowel that is basically paralyzed. Some of the nerves in the head can also be affected. Platinum drugs can affect the auditory nerve and cause loss of hearing and tinnitus(ringing in the ears). Vision can very occasionally be affected.

A lot depends on how quickly your cancer treatment can be stopped. Sometimes the need for treatment is more urgent then the residual nerve damage. Sometimes, the balance between benefit from the drug and the side effect of nerve damage is more finely balanced.

Once treatment has been stopped, recovery is usually slow. It may take months to get even partial improvement and often there will be some residual impairment, either a motor weakness or a sensory numbness or both. Recovery is slower in the feet and legs than in the hands and arms.

There is no specific treatment that enhances nerve recovery. There are no drugs that will directly stimulate nerve regeneration or recovery. If you have severe and prolonged pain, then the pain may require narcotics often combined with antidepressants. In some cases, certain types of anticonvulsants would be helpful. Treatment options are subjects that you should discuss with your doctor, so you have accurate expectations of potential benefits and side effects.

Chemotherapy drugs that can cause neuropathy. NCI lists these as most likely to do so:
Cisplatinum (Platinol)
Carboplatin (Paraplatin)
Vincristine (Oncovin)
Vinblastine (Velban)
Etoposide/VP-16 (VePesid)
Cytarabine (Cytosar, Ara-C)
Hexamethylmelamine (Hexalen)
Suramin
Paclitaxel (Taxol) and Docetaxel (Taxotere)
Other medications reported to contribute to neuropathy include oxaliplatin (Eloxatin), gemcitibine (Gemzar) and thalidomide (Thalomid).

lindaprocopio said:

5 1/2 year survivor! Now THAT gives me hope!
5 1/2 years with no re-occurrence? What a Christmas present your post is to all of us, as we have been searching for someone who has had this cancer and beat it long term! Peggy, who is a 2 year UPSC survivor, was just saying over the weekend that she wished she could find a longer-term UPSC survivor to compare notes with and use as a reference with personal experience, like the 3 of us here in treatment (Deanna, Marge, and me: Linda) are so lucky to be able to do with her. Please consider staying with us here in this thread as a regular visitor, and a member of our little "UPSC sisterhood." You would be so very welcome. Thank you so so so much for posting and for the hope that you represent to us all!

I will make note of the solution you seem to have found for your neuropathy, so I can be ready if that ends up being a problem for me. On December 29th I have my 3rd of 6 rounds of chemo, to be followed by 8 weeks of external and internal radiation. These days oncologists go after even Stage 1 UPSC aggressively with de-bunking surgery and chemo and radiation, knowing how sneaky it is and how easily it re-occurs. But you made it! And that gives me renewed hope for all of us! THANK YOU AND MERRY CHRISTMAS!

lindaprocopio said:

The baking soda mouth rinse really seems to help.
I have been making the baking soda/salt mouth rinse using warm water, and try and hold it in my mouth as long as I can, and do that 4 or 5 times a day. That really does seem to help and is soothing, too. I don't have any actual sores or ulcers, just little tears on my tongue, but it does make eating anything crunchy a little painful. I also put baking soda on a soft washcloth dampened with warm water, and 'clean' my tongue gently with that, which seems to help. It only seems to flare up on my mid-chemo-round week when my white count is at its lowest, at the same time as when my hair follicles hurt. Now, during my 'upswing week' it's not really bothering me.

I went out fir a nice steak and Mudslides at Applebees with a girlfriend today and we stopped at a gift shop on the way home to look around. So I got some Christmas-ing in after all! She got me a little personal blender to make yogurt smoothies, for days when I can't bear to eat real food.