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Hysterectomy done...next chemo

gbazyl's picture
gbazyl
Posts: 23
Joined: Feb 2018

Had my post op visit and all looks great.   So Friday I am seeing the Chemo oncologist.  Any advise as to what I should expect will happen or what I should ask?

 

UPSC  stage 1a   but need chemo and rad

 

Hope everyone is doing well  Everyday is such a learning experience.

 

Thank you

 

Gail

evolo58
Posts: 261
Joined: Dec 2017

Silly chemo tips.

1. I would take a stool softener before the first treatment, just in case. It seems chemo can go etiher way; either your're really constipated or you'll be sitting in the bathroom all day. I was the first, and believe me, passing walnuts was horrible. Chemo has a habit of drastically affecting your bathroom habits. I usually continue to take the softener, reducing the dose once I get going down there.

2. I found a Claritin before treatment and for a few days afterward really DID help with joint pain. 

3. I also found that soaking my fingers in ice water during chemo helped with neuropathy issues. I did the toes during the fifth session as well. I don't think you'd want to dip them in ice water for five hours if that's how long your treatment is. The nurse told me that a half hour to an hour for fingers and toes was sufficient. I did the fingers first and then the toes. Do take them out from time to time!

Ask your care team about this stuff, obviously. :) I don't want to lead you wrong!

Donna Faye's picture
Donna Faye
Posts: 170
Joined: Jan 2017

I would ask what are your risks for blood clots. I did OK with the chemo and rad but then got blood clots and had 6 months on Lovenox shots.  I found out that I wa a high risk but nothing was done to prevent.  

Also be careful with the steriods and taper them off. No one warned me and that caused a problem after 1st chemo.

Hang in there and stay positive.  I have a long thread on my whole experience.

 

 

CheeseQueen57's picture
CheeseQueen57
Posts: 715
Joined: Feb 2016

I’m convinced it limited my neuropathy. Good luck. Be sure to request port 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2416
Joined: Mar 2013

Good tips so far!  I remember hearing someone say when I was at the hospital, "Miralax is a miracle".  I remember using more than indicated by the package and asked my doctor's office staff if that was ok.  Some women have not had constipation as an issue, in fact they had the exact opposite. (Everyone is different)

Are you getting a port?  I think most women did but I did not.  I remember thinking, "it is only six", but chemo makes your veins hard so they won't be able to use the same site in the future and we had issues getting me on chemo #3 and had to do a "deep vein".  Ugh.  That was where they had to do an ultrasound and find a vein.  Since I had the radiation between the set of each 3 chemos I think my veins bounced back to allow the last three treatments without having to do that again.  

Drink plenty of fluids.  

As Donna Faye said - absolutely make sure you have a schedule to step down your steroids.  

For me, the first chemo was the worst.  I think my body had a reaction as to "what the heck is this?!"  and about 3 or 4 days in I had joint pain that was pretty bad.  Some of the ladies have taken Claritin (sp?) to help minimize this issue.  

I think you will find you are going to AMAZE yourself in how you handle this.  I think the first chemo, because it was such an unknown, was the worst.

 

LisaPizza's picture
LisaPizza
Posts: 148
Joined: Feb 2018

Second the constipation. Ugh. I would at least start the Colace at a good dose at least a week before. I think colace is unlikely to cause a big problem even if you do get diarrhea. It's just a mild softener that helps keep a baseline softness. I had to use senna also, but that actually will cause diarrhea. It took me 4 or 5 cycles before I managed not to go from constipation and overshoot into diarrhea - fortunately very short-lived .

Be prepared for some insane fatigue (give yourself room for naps). I would feel like I'd been shot by a tranquilizer dart. Literally could not keep my eyes open sometimes and *had* to nap. 

I was on zyrtec the whole time and still had lots of joint, bone, and muscle pain. Not severe, but it really wears you down. I took Percocet for it ... also did good things for my mood :)  Frankly my mood took a big hit with each chemo ... I'd drop into hopelessness, depression, and anxiety. I'd be convinced I'd be dying soon of this disease and it was probably spreading all over already. The Percocet lifted that mood, and I was so grateful for that because although it was temporary and predictable, it was also painful, and needless suffering.

Pampurr's picture
Pampurr
Posts: 1
Joined: Apr 2018

Gail, Pam D here...I have a follow up post op this Friday..with Dr. Tobias..

 

Endo Stage 1 tumor getting external radiation and low dose chemo

Soup52's picture
Soup52
Posts: 850
Joined: Jan 2016

for me the first chemo was the worst with extreme joint bone pain in my knees. Keep in mind I had arthritis in my knees. After that I heard about the Claritin and took it. Also, the PA had told me that pain is usually the worst on first chemo and that was definitely true for me. It’s like your body is saying what is this? And attacks. Chemo was much more doable after the first time.

derMaus's picture
derMaus
Posts: 475
Joined: Nov 2016

I wish I'd asked a lot more questions before I began chemo, specifically what the success rate was. Per my current onc, it's about 20-30% for my stage and grade (IIIc, grade 3). I was prescribed the usual package - taxol/carboplatin - and went through 6 rounds, only to relapse during treatment. The conclusion was that I have "platin resistant" cancer, a possibility that wasn't mentioned beforehand. I'd ask how you'll be monitored during chemo, not afterwards. Some members here had CT or PET scans at the midway point of chemo; if I'd had that we'd have known that the treatment wasn't working and could have possibly changed the cocktail rather than subjecting my body to further (useless) treatment. I say these things not to frighten you but in the hopes that you'll have better information that I did going in. Best wishes and let us know what happens on Friday. B

Wannabeatit
Posts: 86
Joined: Dec 2017

derMaus. I think you have mentioned in another post thatyour hair also started growing back? If so my hair has started growing back also. Between treatment 4 and 5 although I had a bit longer break between 3 and for but it was only an extra week and a half. I asked the nurse if that was normal. She said my blood counts were down in all my blood work and that meant the chemo was working. Did you have high blood counts that would raise alarm bells?

derMaus's picture
derMaus
Posts: 475
Joined: Nov 2016

Sorry I just saw this now. Blood counts were relatively normal given the situation, except of course for the white count tanking.

Wannabeatit
Posts: 86
Joined: Dec 2017

My chemo doc only gave me a ”robust” 4% improvement from 20% down to 16% recurrence. She said if it was her she would still do the treatment. I had a second opinion from “best doctors”. Their numbers were 30% down to 12%. So reasonably close in the final numbers.

Wannabeatit
Posts: 86
Joined: Dec 2017

I am UPSC stage 1a also. When asked about my extensive LVSI my radiation doctor said those numbers might weaken a few more percentage points but that was just a calculated guess in my opinion Since there is no real data out there about it. I was prescribed 6 rounds of Carbo/taxol and 3 brachytherapy 

gbazyl's picture
gbazyl
Posts: 23
Joined: Feb 2018

What is LVS?

 

Wannabeatit
Posts: 86
Joined: Dec 2017

Lympho  Vascular Space Invasion. It should show on your pathology report if you have it. It is a separate risk factor not included in stages. It means there are cancer cells within the blood vessels of the tumor that can escape into the blood stream. A pathway so to speak for metastasis. You are best to google it for a more accurate description. If it is in your lymph nodes there is a greater chance of having it. 

bluesmama
Posts: 123
Joined: Aug 2014

Things that I remember:

1. Drink water. Treatments tends to make you dehydrated and you want to protect your kidneys by flushing it all out as quickly as possible.

2. Get ahead of the nausea. They will typically offer you a few types of pills to be taken at different intervals. I had to set my alarms in the middle of the night to keep up. I didn't have much nausea as a result. If one combo doesn't work, call your doctor immediately. Don't ever hesitate to call them. I was treated at MSKCC and they were amazing. They have an arsenal of alternative anti-nausea medication to prescribe so don't hesitate to speak up.

3. Try to walk at least 15 minutes a day. Super important to exercise a little bit. Even if it's walkinng down your driveway and back. 

4. Ask to taper your steroids. For my first round, I had steroids the night before and also intraveneously day-of. Then nothing. Felt great the next day then crashed hard. For the rest of my infusions, I tapered off ithe steroids nstead. Much more comfortable. 

5. You will feel tired and have bone pain (with Taxol). My bone pain lasted a few days. Typically, I had an infusion on Thursday. Felt great Friday. After the first, I felt bad Sat-Mon then began to feel well again. As you complete each infusion, this period of feeling unwell may go on longer. At first, I felt well in 5 days. By my fourth infusion, I didn't feel well again until day 11.

6. Ports are often necessary (and convenient) but they come with risks. My doctor wouldn't let me take a port. She said it's not worth the risk. But I only had 4 infusions. 6 if you count the two I had with radiation. My veins weren't happy though. They were hard and painful to touch for months. Heat packs! Definitely ask for them.

7. Stinky chemo flatulance. I had this issue. It was embarassing at night. hehe. 

8. Stomach gurgling. This part made me nauseous at times. Prilosec really helped keep it calmer.

9. Eat healthy and within guidelines. I lost 20 pounds after surgery and radiation. I didn't believe my doctor when she said I'd gain weight on carbo/taxol but I did.

10. Ice your hands and feet. I did this for the entire session for each infusion. I like the cold so I didn't mind. I don't know if it actually helped avoid neuropathy but I didn't have any in my hands and feet at any time. Knock on wood.

CheeseQueen57's picture
CheeseQueen57
Posts: 715
Joined: Feb 2016

I forgot the stinky chemo farts. Almost killed my husband. Gas-x helped greatly. 

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