Starting chemo Sept 05

Susan, hope you get over the stomach thing, maybe go to the Dr to see what it is...



Yes Calico, everything "down under" hurt. I told my husband my vagina muscles hurt!





One thing i noticed that helped a tiny bit was taking my L-Glutamine powder in water three times a day. I had to take huge amounts of it, 10 GRAMS at a time three times a day.



About 10 minutes after i drank it, the muscles would feel just a bit better, nothing big. When i did not take it, like when i forgot due to chemo brain, I could tell the pains were worse.



And my thinking....i have a hard time doing something as simple as paying bills! There is no way i can multitask. i am like one of our cats, easily distracted and then i FORGET what i was trying to do or had to do.



I called the oNC on call when i could not bear the pain any longer and he said this was normal and would go away. Then, later, i e-mailed my OWN onc and she says we will meet next Wednesday before my next treatment and she will do some things to make it better the next time.



As soon as she takes action to help my pain be better on the Taxol i will be on this board telling you all about it, so you can be helped too. I dont know how i can even bear to go back in for another infusion.



And not to scare anyone who needs the Taxol, these weird pains only last about two or three days solid and though they are strange, they do go away after a few days.



Calico, my hero walks a few miles through her pain1!!!!!! When the pain is so bad you dont feel like walking, actually walking is what made my pain subside for a few minutes.....but i only walked in the house....



I will continue to report my experiances to help all of you who i love and who have helped me so much!



I had a choice of skipping the Taxol and just having 4 AC since it was not in my nodes but two of the more experianced oncs of the three i consulted with urged me to do the Taxol and be aggressive since my 1cm X 2.3cm tumor was triple negative and had some weird very fast growing cells in there. The research showed that my chances of reocurrance go from 20% to about 12% if I do AC and TAxol over just the AC. Even in node negative! So if i am like the research subjects, then i will be in the 85% - 90%where it wont reoccur...instead of the 75% where it does not reoccur....hopefully if there are micromets in my body all these different chemos and then the rads will kill them. We can only hope.





On a good note, i noticed my wedding ring did not fit well on my left hand on affected arm...so i went to the lymphadema specialist at Kaiser and they gave me a series of excersizes to do to reroute the lymph system properly after i had my 5 sentinal nodes removed. If i do these every day they will help prevent problems with arm swelling in the future. They measured the affected arm and compared it with the other arm and found there WAS a little lymphadema! But if i get the massages, which you can do yourself too, and do the other things, my arm will be normal again. So you all should measure both your arms or if you notice a ring or watch that does not fit, get some PT right away. Dont wait. You have a chance to reverse the lymphadema and it is easy.



KEEP on keep'in on my friends, and we will all be done sooner than we think.

hi all
was put in hospital for 2 days because of a thrush infection in my mouth thats what the no taste and swelling was,i was also constipated ven though i drank heaps of water and took constipation tabs,in the end they ended up giving me an enima to move it,the infection made me dehydrated thats what probably caused the constipation but all is well down below they got the suckers moving.I have been home a few hours now and the worry is starting to set in I have got back pain chest pains also my tummy is very tight sore and bloated its probably nothing but im getting pains i didnt have before and i panic.
moving on these hot flushes or night sweats or when ever u get them,i get them when i eat when i sleep when im laying there doing nothing,i have counted to over 20 a day is this normal or am i just weird i sit on the toilet and break out in a sweat its driving me crazy .
i have whined enough gunna go back and panic about chest pains and hope its not my heart which i am also worried about
love carol

Carol - know how you feel! This oral thrush is driving me crazy! I had never had it before, neither had my children as babies. Naive me thought the white stringy stuff was just dried saliva because I was so dry in general - could never drink enough. Swollen throat, couldn't taste food etc. Discovered it was thrush by accidentafter about 4 weeks of it!
Given Nilstat mouth wash - made me gag.
Prescribed Fungilin lozenges (sounds like I could be taken into the garden and sprayed with a fungicide - took about 10 days to clear. Stopped using them, a few days later and its back with a vengeance!

I also drink constantly and have stool problems! (sorry for the gore but I have anal fissures as a result of all this - even though the stools are soft, I split and bleed every time OUCH!) Seems that every lining: mouth, nose, anus etc is thinned and prone to problems (ulcers, bleeding etc). I suck on ice during my infusion to help prevent problems in the mouth - think I'll sit on an iceblock today!!

I think I'm dehydrated because of the hot flashes. I call them POWER SURGES I am sure I drink 2 litres a day, urinate 3 litres and sweat a litre or so - yes - doesn't balance. Constantly dry! And yes - 20 a day sounds a conservative number - more annoying at night, though. Not too much continuous sleep happening.

Anyone else have skin cancers appearing as a result of the F (5-fluoracil). They are already in my body (sun damage on fair skin done when I was younger), but the chemo makes them move quickly and come to the surface. I'm covered: over arms, legs, chest back and a few on my face. My hands are the worst because I knock them all the time when I wash or dry them. Maybe my skin will be beautiful when this is all over.

On to my 5th FEC today!

Joanna,

I had the neupogen shot (while in the hospital) after having the neulasta and had no problems what so ever. I think it just depends on the doctors involved as to what hey do.

I go to the surgeon tomorrow to find out if and when we can do the double mast....my onc said last week they may want me to do 12 taxol (weekly) before surgery...this was never mentioned until I was done with the AC...

we shall see what tomorrow brings...
I hate the waiting game the most.
Tina

Tina,
Does that mean no Taxol!! Hope so. I had a bilat mast back in July. Are you doing reconstruction? I still have my expanders in.

Calico and Bubbles,
Now that you mention it, I think that I had ovary pain too. I remember that I kept thinking this pain is too deep and central to be my hips.

I got my blood tested on sunday and my WBC were still low! so they finally told me to do the neupagen and got tested again this morning and my wbc count went from 3.1 to 22.7!
So I can get taxol #2 tomorrow (1 week late). I've never been so happy to be getting chemo.

Joanna

Hi All,

Done with FEC!!! What a nightmare it has been. Feeling human (sort of) at last. It looks as if my veins has now finally given up. Scheduled for Port before Taxotere starts in December. Also started physio for chemo arm - is helping, but still extremely sore!

Really scared of Taxotere. They have to spread the infusion over 2 weeks because it is so strong. Will be doing 2 weeks on, 2 weeks off - 8 treatments in total. Don't know what to expect.....

A friend of mine just finished her 2nd FEC, but her bone marrow count is so low, they are going to stop the chemo treatments. She is in a state - 2 small kids at home. Any of you have any advice? She has been getting all the shots, but apparently onc. say they can not give any more. Surely there must be something....

Any of you on Taxotere? What can I expect. I suspect it is similar to Taxol, which scares me even more when I read about all your experiences.

Hope you are all coping this week. Keep telling myself this too shall pass......

Liezel

hi all,

I am at day 6 after my first Taxol treatment and am just starting to feel mildly o.k again.

You were all right about the aches and pains. They started on day 3 and have been constant I could not have made it thorugh with out pain meds. Even now I still have pins and needles in my finger tips and soles of the feet. The feet and legs have been the worst,last night still needed pain meds to sleep.

today I have to go to town to get groceries,it's starting to look like a barren waste land around here. Many of you have said that walking helps with the pain so a few laps of the grocery store should do me good.

Every day is a little better and hope it is for you too..

Best wishes
Nicole

Liezel,

I asked about the port and they plan to leave mine in for the herceptin. Actually the "model" I have is rated for 5 years....

It looks like surgery will go on as planned in the morning....

Tina

Thanks for the info Leizel – My symptoms are as you describe so I suspect I may have trouble when I go for treatment on Tuesday. Thankfully the thrombosis is under control and I just have to take Warfrin each evening – no clexane injections currently. It is just a pain having to deal with hospital appointments for this and the BC stuff – grhhhhh.

Tina – the very best of wishes to you.

Herceptin is not ‘officially’ funded over here folks and I am still waiting to find out if I would be receptive to this – not a major issue at the moment but I still would like to know now!

Peg I can see your smile all the way over here.

Nicole – hope you enjoyed the walk around the grocery store?

Michelle – how are you feeling today?

Speak soon.

Sandra from the UK

OK, had my second Taxol today after speaking with onc. I have lots of side effects.



She suggested we lower the dose 25% from the typical, 175. Then see which side effects lessen or go away. Then, on the third and fourth treatments we can raise it back up again or not. Or raise it just a little bit.



Also she gave me dexadron tablets to take home and use on the "painful days 3 thru 6 or 7". Two a day will reduce inflammation.



We will try this approach.....and i will report back to you all. Good luck this week !

Liezel, keep going and healing that arm! You are doing good. That way you will avoid permanent injury and weakness and pain. I am doing the same thing. Today i go to the PT department of kaiser and they will do lymphadema massage on my minor swelling on affected arem.

I have been doing streaching, etc, to strengthen that arm also. my arm is sure getting a workout! Sometimes i do the other arm too so that other arm does not feel left out!

Liezel - My chemo regiment is Dose Dense A/C X 4 and Taxotere X 4. I just had my 2nd round of Taxotere and so far, so good. I feel a little more tired on Taxotere, but my red blood count is dropping (10.3 vs. 11.6 3weeks ago). (I had a 3 week break the 1st round due to the Thanksgiving holiday.) I did OK on A/C and was nervous about the Taxotere. So far I've been able to tolerate and hopefully, I can complete on time. Good luck with your treatment plan.

Barb

Thanks for all the prayers.....

I am home...and doing well...Lymph nodes were taken on left side and the path report should be in monday...but the doctor thinks there is still lymph node involvment.

I actually feel pretty good...not in much pain...more stiffness type feeling.

Tina

Pegk,

I get nosebleeds too, I'm glad you posted.

Asked the onc on Thursday about Decadron, he agreed to let me use less, "only" 5 the night before, none in the middle of the night.
I do not look forward to bone pain again, but oh well, better than nausea.

Hope everybody is hanging in there.

We got a bunch of snow last night, I want to play now but my blood counts are at the lowest of all times and I am short of breath just walking stairs, feeling like 41 going onto 91...but oh heck, it's so beautiful outside..

God Bless