Recurrence

LisaPizza

CheeseQueen57 said:

Taxol Reaction

Molly, I too had a reaction to my first dose of taxol. The remedy was stop the infusion, give me more steroids pre-infusion (which were gradually tapered off ) and I successfully got my infusion the next day. Like you, I was impressed with the staff's reaction. At the first sign of problems there were at least 7 nurses on me. I felt I was in excellent hands. Those infusion nurses are angels on earth. 

Exactly the same for me with

Exactly the same for me with the reaction. I was scared to go for my second infusion, but it only happened the one time. 

cmb

EZLiving66 said:

I will be cancer-free for

I will be cancer-free for five years on September 30th. I had Carboplatin and Taxotere which was supposed to not cause neuropathy. Five years later, I am still in pain. Both my feet for the most part are numb with burning and shooting pains, especially at night. The pain also goes up the outside of my left leg. At first, all my fingers were numb but now only my thumb and index finger on my right hand are and, thankfully, have no pain. I have chronic diarrhea and have tried everything - I use Imodium daily and adult diapers. All my finger and toenails fell off during chemo and have never grown back correctly - thank heavens for acrylic nails! 

All that being said, I'm alive. I have a very aggressive form of uterine cancer - UPSC, and, knock-on-wood, it hasn't come back. I only made it through three chemos when I had a stroke and chemo was stopped. My oncologist/gynecologist told me he was saving radiation for WHEN it came back. 

Some women are lucky and have very few side effects. Others have the kitchen sink thrown at them. I wish I would have known about icing when I started the chemo!!

Good luck!!

Love,

Eldri

Diarrhea and antispasmodics

Eldri,

First of all – congrats on your long-term NED status! I know you've had it really rough during and post-treatment - far worse than many of us. So getting close to your 5-year milestone is extra sweet.

But I wanted to share some information regarding diarrhea that I'm not sure I've mentioned here before. I've had diarrhea problems ever since I began taking Metformin back in 2014 for my Type II diabetes. The diarrhea was much worse during chemo and radiation and remained difficult even after treatment ended.

About 1 ½ years after my treatment ended, I started having stomach aches and pains. Fortunately, a CT-scan didn't show any signs of cancer, so I went to a gastroenterologist. He prescribed dicyclomine (Bentyl) for me to try. While this is for IBS, which I don't think I have, I've found that taking this once a day eliminated most of the stomach aches and pains I was having. It also really reduced the instances of diarrhea. I can go for weeks now without needing Imodium, which I was taking almost daily before.

My sister, who started taking Metformin a few years before me, was only able to eliminate her severe diarrhea problems by switching to a different diabetes drug. But I've been reluctant to switch from Metformin to another diabetic drug since there may be some cancer preventative benefit to Metformin (although I was taking it when I got cancer).

So if you haven't tried an antispasmodic like Bentyl yet, it may be worth a try to see if can help with your diarrhea problems.

And to the other newer members reading this post – I never experienced constipation after surgery or during chemo. For me, it was always diarrhea. As others have written, our side effects can be quite different, even when taking the same chemo drugs.

Maxster

Treatment effects

Hello Orchid65, I am so sorry to hear of your recurrence.  I don't know what type of uterine cancer you had but I had serous type, stage IIIC diagnosed in September of 2019.  So it was in my lymph nodes when I was diagnosed.  I had a complete hysterectomy followed by chemotherapy and radiation.  In preparing for treatment after my surgery, I began drinking tons of water, usually 64 oz daily which was and is a big change for me.  Based on research from MD Anderson I also began a high fiber diet (30 grams daily). I also continued daily exercise once i was ok'yd to do so. Exercise boosts the immune system.  Fiber is associated with better treatment outcomes (but probiotics are advised against).  Water really clears the system.  I had constipation from chemo but after the first round I worked out a schedule using senacort that prevented it from happening again.  I was occasionally nauseous and used 3 or 4 anti-nausea pills during the 18 weeks of chemo. (I had 6 rounds, three weeks apart).  I did not start icing my feet until the third round but did my hands throughout.  So my hands are fine but I have some neuropathy in my feet. I recommend icing and having someone make sure the ice is replaced periodically.  I had a heated blanket over me.  I would go in a big slump of tired after the steroids wore off, usually three days after chemo.  But I would rebound in a couple of day.  I exercised as much as I could throughout all of this to boost my immune system. I had 25 rounds of pelvic radiation with side effects of loose stools and fatigue.  Diarrhea came a few weeks after my last radiation and ended in a few days.  So while the side effects are lousy, they are manageable.  I really encourage you to exercise as much as possible now and later.  It helps the mood state and is good for you. I am 71 years old and I am not any kind of athlete. I did the eliptical, weights and even classes.  Now of course its not safe at a gym but there are lots of classes on TV!  You have heard many encouraging remarks on this board and I hope you take them to heart.  I know it helps me everytime I check in to see the wise words posted here.  Again best wishes for a speedy recovery.

 

dgrdalton

Chemo is doable

So sorry about your recurrence and so soon. My recurrence was 18 months after frontline treatment, 3 chemo (Carbo/Taxol) and 6 brachytherapy. It recurred in multiple lymph nodes and I had 6 more chemo. The chemo day was not bad and usually the next day. Then I had joint pain for about 3 days and stayed on top of nausea by taking the Ondansetron at the first sign of queasiness. My taste was off and constipation was an issue. We live 200 miles from the infusion center and I was afraid to take even stool softners until I got back home. The good part about chemo is that by the 7th day I was feeling so much better and the week before the next chemo, I felt good again. The fatigue was not too bad with the chemo. The brachytherapy really caused the worst fatigue.

Wishing you few side effects and pray you will be NED after the treatment.

Mercorby

You can get through this

Orchid65,

Having been in the same situation, I can tell you, while it wasn't a thing on my bucket list, it was doable.  Attitude is a big part.  Here are some things I did to keep my spirits up: I dressed nicely (and comfortably) for every infusion. That included make up and earrings.  My doctor recommened getting a fun wig, so I went to Hollywood Blvd and bought an ombre teal wig. Yes, I wore it out to dinner and sometimes to infusions.  Also, pretty hats and scarves made me feel good too.  I always had something I like to do set up after infusions.  For me, it mostly meeting my friends for swimming and then lunch.  Friends and family were very important, but I went to the cancer counselling center for therapy and meditation classes.  I also took Tai Chi classes.

Side effects: First, the sense of taste changes, so someone adviced me not to try to maintain my usual favorites in my diet, but to go for the things that work at this time.  For me, Thai fried rice seemed to work for me as well as other mild foods.

Nausea and occasional dizziness- generic compazine or benedryl worked, I took Collace preventatively when I took the compazine and that prevented constipation - I started with ginger everything, but it really set off my GERD.

Diarrhea during radiation: Imodium worked

Drink a lot of water.

Shot for the white blood cells - Neulasta or some other one - I requested to not take it again after the first time because it really gave me restless legs.  That seemed to be fine.

Paxitaxil - I had an anaphylactic reaction, so we switched to Abraxene.  My dr. told me it was the Chemofor, an additive added to taxol.  I researched and found out that it had salicylic somethingorother that I am very allergic to.  My allergists documented that I had that allergy, so insurance agreed to the Abraxene.

Your hair will grow back.  Having gone through this, you do change.  I feel like I appreciate things and relationships more.

Yes, there are some days that you just want to sleep or can't concentrate much.  Listening to music using a comfy headset is good for those days.  If you need to rest, rest.  If there is something you want to do, do what you can.  A short walk is better than no walk.

Neuropathy - I learned about L-Glutamine after chemo, but I used it and acupuncture and acupressure and now I barely have any.  The acupressure pads and balls are inexpensive and they worked very well.

Complementary Medicine - I went to a dr that treated many of my onc's patients.  Probably a good idea to see one that specializes in cancer. I felt confident in this dr. Magnesium, melatonin, vitamin D, some Chinese herbs, and mushroom supplements are part of my regimen.

Afterwards, I was put on an aromatase inhibitor.  Had another recurrence that was sort of rare, got treated with brachytherapy.  Now on Ibrance and the aromatase inhibitor.  It's been 2 and a half years since the last recurrence.  I am in remission now, but the dr calls it well-managed cancer because mine will recur again and be treated.  Had a genomic test from Foundation One of the last tumor.  It was helpful to know more about the cancer.

Hope this helps and that your treatment isn't as bad as you thought it would be.

Kind regards,

Corby