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Starting Chemo on Thursday -- Any Advice?

maderik's picture
maderik
Posts: 8
Joined: Sep 2015

Round 1 of 6 begins on Thursday 

I read everything I could on what to expect but what am I not ready for? Experienced advice welcome.

Chemo protocol is taxol/carbo and I have stage IIIC

I also have a notoriously delicate stomach, dry skin and mouth (from removed saliva glands) and am addicted to Diet Coke, though I've tried to stop. Been taking ginger supplement for a few days.

Thanks for any help!

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I just finished my second of 6 carbo/taxol treatments.  Constipation has been the biggest thing for me.  I would suggest trying to get ahead of it using a laxative either day before or day of and for a few days after along with a stool softener. And drink a lot of liquid. If they are giving you anti-nausea meds, take them.  I have had almost no nausea and am taking decadron and zofran beforehand and zofran for a few days after.

Day 3 after chemo seems to be the worst for me energy-wise.  Also, while I haven't had much nausea, I do get stomach pains.  Pepcid and Gas-X work for a couple of us and for me, stretching the abdomen seems to help.

There is another thread just a little farther down on this board titled "Ladies Going Through Chemo" that has more information from women who are currently in treatment and how they are coping.

Good luck!

Chris

pinky104
Posts: 574
Joined: Feb 2013

I did pretty well with chemo.  I never had nausea or vomiting because I was prescribed Emend to prevent it.  My hair fell out from about day 10 to day 12, and not just the hair on top of my head, but all over (eyebrows, eyelashes, etc.).  I had mouth sores after my second treatment.  A friend treated me to some Thai food (spicy and hot) that week, which I definitely would NOT recommend.  The mouth sores didn't last long.  My oncologist prescribed a mouthwash that helped with that.  About halfway thru my six chemo treatments, I became very short of breath when walking or climbing stairs.  My red blood cell count had gone down significantly, so I had to have a transfusion.  I refused the Neulasta shot they offered me due to possible complications.  From what I've read, that saved me the risk of a possible heart attack and saved me from getting a lot of joint or muscle pains that many people who've written on this site have mentioned. 

I recommend taking along a book to read, as you'll be sitting there for five and a half or six hours.  I felt a little high when they gave me some other drugs (steroids and Benadryl) before they started my chemo.  I couldn't read until the effects of those wore off.

I had to have bloodwork weekly during chemo, which did a number on my veins.  My "good" arm has scars on the veins and still throbs occasionally for no reason, five years later.  After switching to my "bad" arm, the lab techs eventually couldn't find my veins there.  They went into hiding!

It's very likely you'll get peripheral neuropathy.  Most people seem to get it in their legs and feet, but a few get it in their arms.  Mine started out as just numbness for a year or two.  I couldn't feel my feet when I was walking.  Then it changed into brief, shooting pains in my toes which I still have. 

Some people recommend taking a jacket or blanket to keep yourself warm during the chemo.  The nurses always heated up blankets for me and gave me a drink or two.  It was nice being waited on!

Some people feel a significant let-down or fatigue after about 3 days.  Mine was very minor. 

Hope all goes well with yours!!  

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

I agree with both Chris and Pinky!

One of the hardest things for me was figuring out what symptom I needed to treat. Once I was able to recognize that, I was able to take the appropriate item to counter the effects. And, I would also recommend that you take action right away.  So, if you are nauseas, take the medication to fix it asap. Don't wait to see if it will pass.  Also, get in front of constipation. Like Chris said, use Miralax before and after chemo until you know that you will GO!

I just learned my lesson on eating with last Thursday's chemo. My neighbor sent over food that was too fatty and too rich for me. I ate it Saturday night and I'm just now recovering from the stomach burning and nausea. Just in time for my next treatment.  What works best for me is fruit, vegetables (baked potatos are wonderful) and very lean meat/chicken.  Toast is a great filler too!

If you haven't already, please consider getting a port. It will save your veins and the issues Pinky described. It does require another surgery but it is well worth it!

Good luck in your first treatment. Come back and ask questions as you go along. We are all here to support you and each other.

Cindi

pinky104
Posts: 574
Joined: Feb 2013

I had a port, but my weekly blood tests were done by phlebotomy techs, not the nurses.  They weren't allowed to access my port, so I got blood taken out of the veins in my arms each week.  A couple of times, when I had problems on chemo days, my blood was taken out of my port, but that was not the norm.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

Wow!  I get ALL of my bloodtests (weekly) via my port.  That is a shame that you were not able to take advantage of your port. :-(

Knowing what I know now, if anyone else encounters that issue, I would push hard for them to use the darn port!

Montgomery
Posts: 4
Joined: Sep 2015

Glad your port worked well, had the worst pain ever after placement the first week and then couldn't lay on that side for six months until I had it out.  Found out the first doc had used a larger than necessary one to put in.   Still have occasional  pain in that area.   How can you know how proficient a doctor is?  We really are at their mercy.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

Me too Montgomery. In fact, my port pain lasted 5 weeks. A lot of it in my shoulder. And after chemo, it hurt a lot. My pain has finally subsided. One of my nurses told me that it can take 6 weeks to heal. Chemo does slow down our ability to heal. My pain has subsided signficantly. I still feel it some and still can't lay on my left side. But, I watched 3 people at the chemo center TODAY that got stuck 8 times EACH and they could not find a vein. Three people! So, they couldn't get their treatment today. Not to mention, the pain they went through. One poor man was almost crying. Terrible. So after all of that, they are now forced to get a port.

All that being said, I am willing to deal with the port issues over what those without one have to do.

I wonder if my port is too big too? It sticks out pretty far.  One of our other nurses told me it might be sitting on a nerve which means it will never be completely painless. But, it is so much better and definitely doable.

Did it hurt when they took your port out? Like you, I plan to have mine removed as soon as I can. And the doctor said he would do it in his office. Seems like cutting my skin and pulling that thing out won't be a cake walk?????

Thanks for the information.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

The phlebotomists do not use the port for the bloodwork I get done 4 days prior to chemo.  Probably because I go to the regular lab at my HMO, and not the cancer hematology department. I asked about that when I met with my medical oncologist.  If I need blood work the day of chemo, then it is likely they will use it.  Since I'm only get my blood checked every 3 weeks and I have really good veins, it hasn't been an issue so far.  

That sucker does stick out quite a bit on me, though.  It's still worth it.

Montgomery
Posts: 4
Joined: Sep 2015

Glad to hear another woman did research and stood up against the rush to give her a shot.   My feet are still bad, some days worse than others.  Fatigue after 3 days ? How about too weak to turn a faucet on to get a drink of water, taking baby step baby step to walk.    Getting chemo was a breeze, the after effects were really, really bad.  Asked my husband to let water drip and I would hold my tongue under, just kidding but thought about it.

Try eating only organic, and maybe a organic filet mignon once in awhile to keep the red cells up.  Oh, found that Jergens alovera lotion sooths the neuropathy in the feet, put it on right after a bath.

I can end on a good word, try baking soda and salt water for a mouthwash, use it to this day and it is great.  1/2 tsp of each in a quart of water.   Gentle and effective.

 

1GodBlessed
Posts: 1
Joined: Sep 2015

STOP the Coke diet or otherwise! You may want to lie down during the actual chemo treatment (seems to work well for legs & feet).  Make sure to tell the Nurse to put the drip slowly for the steroids or you may get "restless legs" which is agonizing. BTW steriods will make you gain weight.

 Keep doing a healthy diet, stay away from SUGARS do as much natural foods, veggies raw or juiced or frozen NOT canned and fruits fresh, frozen NOT canned.  Talk with Dietician about supplements.  READ everything you can about your diagnosis, treatment and if interested prognosis... it helps to just stay focused on why you are where you are.. and there is new trials which may prove beneficial to you.

Last but not least if you do not know God, find out about Him, and His Blessings for your health.

 

 

 

maderik's picture
maderik
Posts: 8
Joined: Sep 2015

Thanks for the advice. I appreciate it. Just came back from an appointment to find the first session has been delayed a week. That will give me time to take all your wonderful advice.

Maddy

 

Montgomery
Posts: 4
Joined: Sep 2015

Maddy,    My good nurse friend told me, "it will be worse before it gets better".  She was absolutely right.  I hope you have a sense of humor, because that and whatever faith you have will help.  I kept remembering the ones that loved me and have passed and asked for their help to get through each day because I feel they are always around us in difficult times.  

You know we went out and got every funny movie we could think of and laughed and laughed,  it has been proven that laughter will help in stressful times.   And let yourself have a short pity party when you need it, cancer is awful, the treatment is awful, it is not fair, but who said life is ever fair.  So, you deserve tears every now and then, they heal as well.

Good luck

Montgomery
Posts: 4
Joined: Sep 2015

Three years out of UPSC with no involvement.  5 Chemos and 3 radiations, refused neulasta shot after researching and reading devasting side effects.  Try to remember you have to be your own best doctor, research, research , research.  Nuitrition and staying away from germ environments kept my white cell up.  Doctor was doubtful until she saw it working.  As the chemo did quite a horrific number on me, with each one can't imagine adding side effects of neulasta or the drug like neulasta.     You will find the debate about how many chemo treatments is still ongoing.

Also do not feel worried about changing doctors, if it isn't a good fit, keep searching.  First one was great surgeon and lousey with follow up, second one gave me less than 10 minutes each visit and yelled at me when  I asked a question , (M.D. Anderson)  Third one I think is going to be good actually interesting in tracking heriditary issues. 

It upsets me that now it is decided women do not need PAP tests, well a PAP test found my irregular cells, then a biopsy confirmed it.  Medical information changes every year, don't let today's "latest" word be the only thing you listen to.

Good luck and remember BE YOUR OWN MEDICAL ADVOCATE 

 

Forgot to add when chemo took longer to recouperate and my feet went numb with neuropathy, I said thats all, I need to be able to walk off the steroid fat .

 

 

AWK
Posts: 364
Joined: Mar 2013

As part of the trial I am in they require a Neulasta shot every three weeks as they identified potential issues with counts and bone marrow production as a side effect.  Largely this is because the participants have advanced cancers and have been through multiple lines of treatment so the group is vulnerable to issues related to anemia etc.   

I haven't had any problems with the shots or aftereffects from them.  I take a Claritin (sp?) the morning of the shot and for the next four days at the recommendation of the nurses and a few friends who have had them.  I think the key is really understanding the need for the shot and weighing the risks versus the benefits. 

I am healthy with the exception of the cancer but I am now anemic and getting transfusions for both platelets and blood.  The Neulasta shot is the easist part of all of this.   

Healing hugs to all - Anne

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

I, also, definitely recommend getting a port. Mine was inserted about a week before I began chemo and I am so glad I had it! I have always had trouble with blood tests, being told my veins were too small, too deep, rolled etc. I have had no problems with my port, just some minor discomfort for a few days after it was placed. It is very ugly, sticking out like a big wart! It's been 1 ½ years since I finished chemo. I see my oncologist( Dr Wenham at Moffitt Cancer Center) tomorrow and I am going to speak to him about removing it.

i did have some really bad reactions to chemo. It would usually start on the 2nd day after chemo. At first fatigue and just feeling out of it, sort of like the flu. It lasted for about 5-6 days the first treatment, but gradually lasted more than 2 weeks for the last 2 treatments. I just couldn't get comfortable, especially after neuropathy set in after my second treatment. After my third treatment my Dr had to take me off Taxol and substitute Taxatere to try and keep the neuropathy from progressing. And don't even ask about constipation! 

Looking back, I would recommend taking Miralax at least 2 days before and for a week after treatment. I ended up taking it every day and still needed to take a laxative occasionally. Please keep your dr informed of any problems you are having. Dr Wenhams PA, Casey, was wonderful and made sure that I got answers to all my questions. Also force yourself to keep well hydrated and eat whatever you can, especially protein, to help you heal and get your strength back. I think if I had followed this advice I may not have reacted so poorly. But I did get through it, my hair grew back, my energy came back and the neuropathy is almost gone. Don't be afraid to coddle yourself, rest when you are tired and most of all believe that you will beat this thing!  Sandy

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

Would you please let me know what Dr. Wenham says about getting your port removed?  I plan to have mine out as soon as I finish all of this. Well, maybe after I get my first scan post all of this would be smarter...  Thanks!  (Great post BTW)

For newbies in the general area of Tampa. I also have Dr. Wenham as my gyn/onc.  He and his staff are great. Moffitt is a large facility but everyone is kind and cares about us. I highly recommend them. 

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

Well, my checkup went very well, CA125 still at 7 and I am still NED! I spoke to Dr Wenham about my port and he is scheduling an appt to remove it. BUT, it has been 15 months since I completed treatment. I don't think he will want to remove your port right away. I was hoping you were at Moffitt today so we could meet. Good luck, I hope you don't have have any serious reaction to chemo this time. I don't know which is worse, going every week or going every 3 weeks with a stronger dose.  Sandy

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

Sandy, such GREAT news!!!!! Congrats and I'm so happy for you.  I responded to you on the other thread before I read this one.

I'm with you on the weekly versus every 3 weeks. On the weeks where I get a few good days, I think I can continue this way. But, when I don't get a break, and have to face yet another week, I am convinced I should change to every 3 weeks. It's almost like... give me a full bad week and then two good ones to get ramped up again. However, after hearing what you went through, it doesn't sound like you got a break in between either.  Too bad I don't have a crystal ball!

Do something special today to celebrate your good news! And, I'll celebrate with you in spirit! Smile

Lots of love your way,

Cindi

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

With regard to port removal, mine was removed about six weeks after my last chemo treatment. This also followed a baseline post-surgery CT scan so as to have a good means of comparison for the future (my port was accessed the last time for the scan). My UPSC was stage 1a, grade 3, but we are all hopeful we will not see a return, so my oncologist said it would be fine to get it out. Removal was much less painful than insertion. In any case, I would certainly recommend getting a port for various reasons and would do it again if needed.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

Thanks for the response. Were you awake when they removed your port?  My port doctor plans to remove mine in his office which has me freaked out.  Not sure I want to know what the heck they are doing.  Cindi

ps - I miss being a tough girl!  Prior to chemo, my pain tolerance was high. Doctors always commented on that.  Now, I'm a big baby. I have zero tolerance and on my bad days, even noise hurts. ugh!

ConnieSW
Posts: 1568
Joined: Jun 2012

Mine was done in the doc's office and I was in and out in less than an hour.  I was given light IV sedation and was told I'd stay awake. Ha!  After he numbed me up, I could feel a bit of tugging as he made the incision then drifted off very briefly and woke as he started to close the incision.  I was really disappointed because I wanted to see the little bugger.  Anyway, don't spend one minute fretting.  It'll be the easiest thing you've done in all this.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
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Thanks.  But this guy isn't going to use sedation.  That's why I'm freaking out.  And, what is so dumb about that is; it is way down the road! And really the least of my issues at the moment! Not sure why I have decided to fix on it. Who knows? I could go to someone else that would sedate me.  Anyway, I do appreciate the support and input.  :-)

ConnieSW
Posts: 1568
Joined: Jun 2012

I honestly think I would have been fine without it.  The pricks when he numbed the area were a bit uncomfortable but nothing worse than with dental work.

Anyway, this will soon be behind you and you and NED will walk together into the sunset.  Three years later, it's getting hard to remember being hairless,  short of breath from climbing a flight of stairs,  spending whole days on the couch too fatigued to even watch tv.  

pinky104
Posts: 574
Joined: Feb 2013

My hospital has two labs, one for the main part of the hospital and one located in the Cancer Center.  I get my bloodwork done in the Cancer Center's lab.  I think the reason for their not removing  blood from the port in the Cancer Center's lab is the fact that the people working there are phlebotomists, who are not trained to take blood out of a port.  They probably aren't allowed to do that under state law because they don't have their nursing licenses. RN's in the main part of the Cancer Center would have the training and the license to prove they've had the training.   

Editgrl's picture
Editgrl
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Joined: Jun 2015

I'm sure that's the reason.  I'm just lucky that my draws are 3 weeks apart and that I have good veins... so far.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

A little late but maybe some ideas ill still be helpful.  I have had 16 Taxol/Carbo treatments 2Taxol and 7 Doxil treatments .  Currently waiting for a different chemo that may work.

Start a journal and write down how you feel and every thing that happens.  It will probably repeat the next time.

Avon Skin-So-Soft helps keep my shin soft.  I slather it on after every shower.  Baby oil would work too I think.

My dentist recommended Bio Tene mouthwash and I have not had any mouth sores for 2 1/2 years.  It helps with dry mouth, too.

Stay hydrated, but if you can't, ask for hydration, Alsp don't be afraid to call your dr. If you have concerns 

I took an I Pod and soft relaxing music along on chemo day, soothing. Adult coloring books are kind of cool.

if your mouth tastes like metal, spicy food my help.  It seems that even when I can't eat anything else, pizza always worked???

rememmber. It will get better

hugs and prayers, Lou Ann

AWK
Posts: 364
Joined: Mar 2013

I have been thinking of you and hoping things were improving or at least stable.  What are they looking at for you now?  Have they talked about Avastin or Gemzar?   We should compare notes if you feel like it; as you know our journeys are very similar.  Sending  and keeping you in my prayers - Anne

Lou Ann M's picture
Lou Ann M
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Joined: Feb 2015

So far i have not heard anything.  The results from the tumor thaat they sent off are not supposed to be back for 6 weeks after surgery.  We are waiing until then to restart.  My surgeon/gyn-onc didn't want me to start chemo again until I was completely healed from the surgery.  i have a post op appointment with my surgeon on Monday, but he is not the one who handles the chemo.  My Medical oncologist's appointment isn't until the middle of Oct.  I am starting to feeel a little stronger, but this has ben slow going.  Not a lot of pain, just super week.  Hugs and prayers, Lou Ann

AWK
Posts: 364
Joined: Mar 2013

My genome test results took about six weeks so that sounds right.  Hopefully you can take this time and heal, build up your strength and have some fun.  Hang tough and as you know - take it a day at a time.  More hugs.  Anne

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I saw Dr Apte for a third opinion and was impressed, both with the facility itself and with the staff. Gees, valet parking came with the service, too! It's a big place and because of that, somewhat intimidating. I was treated quite well.

It's apparent that my doc thinks I'll recur, although my Ca 125 was 10 the last time I had it checked. I am understandably hesitant to have my port removed now. I am almost 2 years out from surgery and, like you Sandy, 1.5 years out from my last Tx, which was the chemo combination Carboplatin and Taxol. I have been wondering if you still had your port, Sandy, and am happy for you that you'll have it removed. My dearest friend had her's removed recently (breast Ca) and her Doc told her before surgery that she was going to be "deported"!

Abbycat2's picture
Abbycat2
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Joined: Feb 2014

And wishing you the best in your journeys. Please keep us posted and in the meantime, stay strong and be gentle with yourselves. Anne, are you able to spend time with Cisco?

Warm Wishes,

Cathy

 

 

 

 

AWK
Posts: 364
Joined: Mar 2013

I am overall doing okay.  Fatigue and some challenges with platelet levels and hemoglobin levels.  Yesterday I was at Cedars for updated counts from Wednesday and a probable transfusion.  My counts actually rose a bit so they decided to hold off and recheck on Monday. I was speaking with the nurses and said that I was beat and can't seem to get my energy levels up.  The one nurse laughed and  me that I do have cancer.  They tease me about this a lot which is a good thing.  I also now have kidney stones - ugh.  The urologist saw that as part of our appointment this week for my first stent replacement.  

I am able to ride or if my counts are too low - groom and hang out.  It is therapeutic like your swimming must be!  

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Glad to hear that you are hanging out with Cisco, Anne. I think you are right about my swimming is like you grooming and/or riding Cisco. After I swim laps- at least a mile at a time- I feel great, healthy, on top of the world! It last all morning and chases away any thoughts about my cancer. This is the best psychotherapy I can have!

Warm Wishes, my friend,

Cathy 

 

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