Starting Chemo on Thursday -- Any Advice?
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!
Comments
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Hydrate, hydrate, hydrate!
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
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Advice
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!!
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Agree!pinky104 said:Advice
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!!
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
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Chemo Checks
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.
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PortTeddyandBears_Mom said:Agree!
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
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.
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Pinkypinky104 said:Port
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.
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!
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Neulasta shots
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 .
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Port painTeddyandBears_Mom said:Pinky
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!
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.
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neulastapinky104 said:Advice
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!!
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.
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Beginningmaderik said:Thanks for the advice
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
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
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Port PainMontgomery said:Port pain
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.
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.
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Just thought I would weigh in on NeulastaMontgomery said:Neulasta shots
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 .
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
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Port
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
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Same as PinkyTeddyandBears_Mom said:Pinky
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!
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.
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Editgirl
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.
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SandySandy3185 said:Port
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
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.
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That makes sense, Pinky.pinky104 said:Editgirl
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.
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.
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TeddyandBears_Mom said:
Sandy
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.
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
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Yeah!Sandy3185 said: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
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!
Lots of love your way,
Cindi
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