need some motivation

you have been through a lot the last few months, physically and emotionally.  Try to keep with your exercise.  They help,you,feel,better, not only physicall, but mentall, too.  Try to do everything you can to,lift yourself up, you are worth it.

sending you lots of love, hugs and prayers, Lou Ann

it is day 6 since first infusion and I am already defeated. I will be calling my chemo doc on Monday but I think something went terribly wrong. I thought the nerve twinges that started after I finished my dexamethasone (2 days following infusion) would diminish and I would be on my way but by the end of day 4 what started as a sparkler type affect throughout my body turned into a full blown fireworks of bone pain like none other, everywhere. Starting at the top, my teeth are numb, like I am on the tail end of dental novacane. My left ear and throat hurt like I have the flu, nerve sparks throughout my torso mostly, every bone in my body either aches or hurts or pains me. The pain is constantly on the move and made its way to my feet and ankles which makes it difficult to walk, what the hell is going on? I am scared, can't wait until Monday to call in to my chemo nurse. Has anyone ever experienced this reaction or is it unique to my body? I have had every single side affect in the laundry list along with constipation that I am trying desperately to resolve, I am drinking the excess fluid without much of a problem and although my taste buds have changed to the extreme I am getting the nutrition so far. I do know the science behind Carbo/Taxol and wondering if maybe the doc will prescribe another combo or dial back the dose, or something. I consider myself a tough, focused, do what you gotta do and get it done person but this has broken me out of the gate. If this is all from #1, how will I make it to #6? I can't help but think the treatment of cancer has not come all that far, it feels absolutely barbaric and tortuous right now. Help!

Good morning, Soup52, the words from your background story are the voices in my head. Although I have Stage 1 clear cell, I understand the severity of the histology of the cell. There just isn't enough data on the endometrios "clear cell" outcomes because it is so rare. Consequently, we get lumped into the category of the other cancers that have the same histology in order for the doctors to pick a protocol. in a discussion with my Memorial Sloan Kettering (Manhattan, NYC) surgeon she basically said out front that they probably will never have the data needed, the funding is just not there because too few people have it. Thanks for sharing with me regarding the bone pain. Your experience with the bone pain has been the most positive story I have read. If I have to continue this chemo protocol I would like to start basic with pain meds I pick and choose as needed, no shots. Still not sure about all 6 treatments, since it is stage 1 I may ask the doctor about abbreviating the full cycle. On this beautiful, crisp sunny morning in North Jersey, I am taking a deep breath and motoring forward once again. Thank you so much and I truly wish you continued health and ease in your daily life.

Definitely let your doctor and chemo nurses know what you are experiencing.  There should still be a nurse to talk to, even on a Sunday. I had pretty much the same experience with the first infusion of carbo/taxol and really appreciate how intensely painful and unrelenting it is. It will abate to some degree before your second treatment, butyou shouldn't wait till then to let your chemo team know what you are dealing with. It can't be emphasized enough that you don't need to soldier through these side effects because the nurses and doctors have some tricks in their bag to help you. There are a number of things that can be done to make things easier for you going forward. 

1.) They can lengthen (slow down) the infusions or give them more frequently in smaller doses so you tolerate them better.

2.) They can switch you to another drug in the same group as taxol...like to taxotere. Many of us, including myself, had this done and it really helped.

3.) They may suggest trying Claritin or ibuprofen for pain relief and that does work for some, but neuropathy is a unique kind of pain that most traditional pain meds are ineffective against and they may prescribe an anti-depressant or anti-seisure medication instead because they sometimes work.

4.) You may need B12 supplementation as it is particularly important to nerves and may help with healing of damage that has already occurred and could help to reduce how much damage happens from future treatments. I don't know how old you are, but after age 50 we're less able to absorb B12 from food because of decreasing stomach acid production and start to need to get it from supplements or monthly shots. The cancer itself, surgery, and chemo all tend to leave us at a deficit because those are events that convert up to 80% of the body's B12 into it's inactive form. The routine lab test for B12 isn't very helpful because it doesn't differentiate between B12's active and inactive forms; it counts both for the total. There is a new test out there for just active B12, but most labs don't do it yet and its not yet covered by insurance. A test called the MMA would be more indicitive that active B12 levels are low.

5.) Hypothermia products can help. They make ice caps to help prevent hair loss if you use them from the first treatment and I imagine they probably help for migraine headaches and hot flashes, too. They also make mittens and slippers to wear during treatments to protect against neuropathy in the feet and fingers. I used those starting from my second infusion and my neuropathy definitely didn't get worse from that point forward. I especially love the slippers because they are effective for giving me relief from pain between treatments and since when nothing else works. 

As far as constipation goes, I was told to follow a low fiber diet, drink at least 8- 12 glasses of fluids daily, and take Miralax morning and night preceded and followed by a large glass of water. Even then, I had to add 2 Senekot-S morning and night until I was done with chemo. That's what my doctor recommended for me, but your doctor may want you to follow a different bowel regimen, so check with him first. The main thing is to have some kind of regimen to follow with suggestions for adjustments if needed. The low fiber diet is counter-intuitive, I know, but the rational behind it is sound. The chemo drugs we're on are neurotoxic and besides causing the nerve pain, they also do a number on our digestive system nerves. High fiber foods work by causing bulk to stimulate peristalsis in our intestines and this doesn't work so well during chemo, so high fiber foods can actually potentially cause a blockage during chemo and that would just add to the misery of it all.

Hope this helps. Don't sit there suffering another minute. Call your doctor's office. Most likely a chemo nurse will answer or the answering service will contact one to call you back.

I have had all-over pain after my infusions. For me it starts about 48 hours after the infusion and lasts for about 48 hours. It starts and stops like someone turning a light on and off. I do have other bouts of leg, foot, and hand discomfort. By two weeks after an infusion I'm generally feeling good. All of these symptoms seem to come in cycles and all stop. I've now been off of chemo for almost two months, and have not even had neuropathy during that time. (I have three more rounds of chemo to go.) I take Claritin and B6 every day between chemo infusions and also take prescription-strength doses of Tylenol and Ibuprofen as needed. I hope that your symptoms also pass soon.

Beccabrown, encouraging to hear your story, I know everyone will be affected differently but will hold onto the more comforting possibilities. I am already considering dropping 3 of my chemo treatments, will see how my doctor reacts when I talk with her.  

MABound - making a list from your suggestions to have in front of me when I make my call to the chemo nurses. Stopping the fiber which was my usual way of eating and dialing it down, taking Senokot - started yesterday and will continue. wish my chemo nurse had asked what I was eating with my first constipation complaint 2 days ago. I am beginning I need to be one up on the professionals since I am not sure if I am trusting them to be up front when I ask about things.

I think they don't necessarily tell us all of the possibles like the drug commercials do because we all react differently to chemo and telling us everything that might happen would only serve to increase our anxiety beforehand needlessly. Also, different doctors, different philosphies and preferences for treatments. That can be the value of this discussion board, you learn things that you can ask about, so that you can make the most of your face time with caregivers.

Scotgirl said:

Chemo#1 of 6 completed - need help, please

it is day 6 since first infusion and I am already defeated. I will be calling my chemo doc on Monday but I think something went terribly wrong. I thought the nerve twinges that started after I finished my dexamethasone (2 days following infusion) would diminish and I would be on my way but by the end of day 4 what started as a sparkler type affect throughout my body turned into a full blown fireworks of bone pain like none other, everywhere. Starting at the top, my teeth are numb, like I am on the tail end of dental novacane. My left ear and throat hurt like I have the flu, nerve sparks throughout my torso mostly, every bone in my body either aches or hurts or pains me. The pain is constantly on the move and made its way to my feet and ankles which makes it difficult to walk, what the hell is going on? I am scared, can't wait until Monday to call in to my chemo nurse. Has anyone ever experienced this reaction or is it unique to my body? I have had every single side affect in the laundry list along with constipation that I am trying desperately to resolve, I am drinking the excess fluid without much of a problem and although my taste buds have changed to the extreme I am getting the nutrition so far. I do know the science behind Carbo/Taxol and wondering if maybe the doc will prescribe another combo or dial back the dose, or something. I consider myself a tough, focused, do what you gotta do and get it done person but this has broken me out of the gate. If this is all from #1, how will I make it to #6? I can't help but think the treatment of cancer has not come all that far, it feels absolutely barbaric and tortuous right now. Help!

That is just awful.  I agree with everyone- call your Dr. mine provided me with a number for weekend emergencies but the service will know who to put you in touch with- you DO NOT have to suffer/soldier through this.  They do have things that can help.
I wish this thing had a like button- there are SO MANY great responses - I sure do appreciate all the knowledge and caring here- all you ladies really do ROCK!!!!  I could tell you of my experience but it's like so many of the others and really they have covered everything.

I just wanted to let you know that yet another sister is chiming in and saying YOU CAN DO IT- praying for you and sending you huge (((HUGS)))

MAbound said:

Trust

I think they don't necessarily tell us all of the possibles like the drug commercials do because we all react differently to chemo and telling us everything that might happen would only serve to increase our anxiety beforehand needlessly. Also, different doctors, different philosphies and preferences for treatments. That can be the value of this discussion board, you learn things that you can ask about, so that you can make the most of your face time with caregivers.

MAbound, yes, these discussion boards are helping me to ask the right questions when sympthoms show up and catch me unaware. Thank you.

janaes said:

Scottgirl,  Im so sorry you

Scottgirl,  Im so sorry you have had so many side effects  I did get bone pain.  It did seem to be worse on the first infusion.  I remember it was in my head too.  I did get constipatio but i started taling myralax the day of my infusions and for a few days there after and mt next ones werent as bad for that.  I hope you get a hold of the nurse to give you some options.  I know it doest feel like it but youll make it through. 

For me, i went to the store on saturday with my friend and i got me a chair back support the gives me better support.  I feels great especially in my car.  It doest nessesarally take my pain away but it helps me feel supported.  I bought me foam roallar that i hope to use today for my stretches.  It was so nice to be with my friend saturday as it gave me something to do and that helped me be motivated. 

Thanks Janae

SO GLAD you had fun with your friend and it brought you joy and motivation   Excited that you found some back support and that roller- hope they both do their job and continue helping you   (((HUGS)))