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

deanna14 said:

Hello Ladies!
Sorry to be so quiet. I had a really busy weekend and now I am exhausted, but having a relaxing day today.
Peggy, I didn't get an email, so maybe it did get caught up in your junk mail. I've been wanting to ask you if you ever had any shortness of breath with radiation? It mostly comes when I am really tired and it scares the crap out of me. I don't have my next treatment until Wednesday and I guess I will ask the doctor. I don't know, maybe I'm coming down with something. It is soooo scary to develop a new symptom...
I'm happy that you had a good time with your grandson.
Linda, thank you for the compliment on the picture. It sounds like you are feeling pretty good after chemo #2. I sure hope Marge is doing okay, she hasn't posted much lately.
I've got a countertop full of baking goods and need to get busy. Can't seem to find the energy. I will be happy to finish up my radiation next week, maybe I will begin to get some energy back. Then it is on to chemo in February.
You girls take care. You are in my thoughts and prayer. Love and hugs.

pjba11 said:

shortness of breath
Deanna; I like your pictures. It is fun to see the different personalities. I am trying to think of how to answer your question on shortness of breath during radiation. I had a type of 'weakness' when I had internal radiation. Similiar to getting the flu.. maybe. I had a all over weakness, a type of shortness of breath. It would come and go especially when I would stand up suddenly. I was told later that it could have had more to do with my getting 'peanut butter' poisoning. ( I ate a whole jar + of the recalled Jiff while in radiation causing salmanella poisoning.) My radiologist thought I was reacting to the radiation until the news announced the peanut butter recall. I had been so sick that all I was eating was the peanut butter and that was making me worse! Is this shortness of breath something that could be stress realated? When my daughter has any emotional trama she has a lot of trouble breathing. I know what you mean about the new symptom thing. I still have any new unexplained 'twinge' start a mini anxiety attack. Especially when I feel something going on with my lungs where the Drs are doing a 'watchful waiting' on both sides because of 'spots'. I also just had my right arm Xrayed because of shooting pains. My cuff may be tearing. It had a minor tear before on one of my MRI results, but may have repaired itself. I also have osteo going on. Shoveling snow may have aggravated either problem. 2 months ago they had to X ray my foot. Arthritus again. My back was x rayed before that due to radiation changes in my lower spine..... Any of these things should just be expected as I get older, but because of our cancer diagnosis any of these things trigger a lot more awareness than most 'normal' people feel. My doctor is so patient and says it is all to be expected from the aggressive treatments I have been through. She encourages any new pains to be totally investiaged so that the stress levels stay down. We know that we can not rely on my CA125. I appreciate her judgement totally. Hope you get your answers too. Nothing should be overlooked at this stage.

lindaprocopio said:

If anyone hears from Marge off-board, please email me!
I will email Marge and see how she made out with her blood work today, and if I hear back, I'll email each of you. Deanna, chemo causes a pain very similar to arthritis about the 4th & 5th day after each round, and then it goes away until the same time the next round,...at least for me, so far, after 2 rounds. If radiation also causes that type of pain, I can see why our oncologists aren't trying to do chemo & radiation concurrently. (although I would LOVE to speed up this endless 8 months of treatment, and be done with all the doctoring!!) Maybe they will reconsider doing both simultaneously with Marge if she is suffering too much. Your shortness of breath seems like the same kind of 'scary' as my light-headedness. A few days ago I started getting this tiny tingling that you feel just before you pass out (almost like hyperventilating, but not as dramatic.) I haven't actually blacked out at all or even swooned, but it feels as if I could if I don't sit down. It makes me afraid to drive. But now when I feel that strange weakness, I drink a Boost and that seems to make it stop. I am in my predicted mid-round 'low blood count' week, and I have that cough. But I DO call my oncology nurse with every symptom to get it on my record, and she always has the oncologist call me back to let me know at what point I need to get my butt in there. I haven't had to go in between rounds yet, but it hasn't stopped me from phoning every few days if I am worried about any new symptom. Please don't hestitate to call your oncology nurse. They need to know what's going on. I'll let you know if I succeed in reaching Marge. I may even have her phone number somewhere. What time zone is she in?

pjba11 said:

you are so funny!!
If you think this part of my life is interesting.......? You are welcome to share all of my sad tales. I do not feel threatened in the least. Hope you are feeling good.

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).