thescrappyhomeschooler Posted October 20, 2012 Share Posted October 20, 2012 what does the Hive have to tell me? I'm getting Carboplatin and Taxol IV. 6 rounds. Every 3 weeks. What should I do to prepare myself? Suggestions for getting through it? Quote Link to comment Share on other sites More sharing options...
Michelle in AL Posted October 20, 2012 Share Posted October 20, 2012 Hi, your OB might not have to talked much to you about your chemo, because he might not know too much about it. Your oncologist and their nurses should do extensive teaching. Carboplatin is less toxic to the kidneys than it's sister drug Cisplatin, so you won't have to worry about hydration too much. Your doctor should monitor your kidney function prior to each dose to be sure your kidneys are functioning well. They will also give you medications prior to chemo to avoid any nausea or vomiting. Most people have very little nausea. A hypersensitivity reaction manifested by flushing in the face can occur but usually not until the 7-9th dose, so you won't have to worry about that as much. Taxol can cause a hypersensitivity reaction that your doctor will premedicate you for (to avoid this from happening). It can also cause peripheral neuropathy which is numbness burning or tingling in the hands or feet. If this occurs tell your doctor. The nerve damage can last for a few months or it can be permanent, so it's best to tell your doctor if this occurs so they can adjust your dose or change to a different drug. It's one side effect we want to prevent because if it gets too far it can cause difficulty with hand coordination and walking. One of the first signs in your feet may be that you feel like you're walking on cotton or a basketball. These symptoms usually occur between the 4-6th dose. Hair loss is likely to happen around day 18. :grouphug::grouphug::grouphug: There aren't enough hugs! Try to eat a well balanced diet. Diets high in anitoxidants can actually cause cancers cells to increase or relapses to occur more often. If you loose your appetite choose your proteins first since proteins are the building blocks of healing. Walking helps. Cancer patients that walk do better in all ways. That's about all I can think of right now, I hope that's not too much info. Your oncology clinic and the other patients there will hopefully be a better help to you. Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted October 20, 2012 Share Posted October 20, 2012 http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/carboplatin http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/paclitaxel Side effects vary widely for chemo and are largely unpredictable. How are you going to get info? Is there an onc nurse line where you are seen? What if you have side effects--who are you supposed to call? Why did your doctor choose this combo instead of another? I would be concerned at having a doctor who would not communicate well with me before, during, and after chemo (Some side-effects can linger.) Do you have a choice? Quote Link to comment Share on other sites More sharing options...
thescrappyhomeschooler Posted October 20, 2012 Author Share Posted October 20, 2012 Thanks. That does help. It was my oncologist who didn't want to answer my questions about chemo. He said the nurses would explain the protocol to me on my first day. I'd rather know what I'm going into instead of going in blind. I will contact the local cancer support place and see if they can help me find out more, too. Quote Link to comment Share on other sites More sharing options...
sunnylady303 Posted October 20, 2012 Share Posted October 20, 2012 :grouphug::grouphug::grouphug: There aren't enough hugs! She's right; there aren't enough hugs for you. :grouphug::grouphug::grouphug: I have no advice just wanted you to know I'll be praying and journeying with you as best I can online. Quote Link to comment Share on other sites More sharing options...
thescrappyhomeschooler Posted October 20, 2012 Author Share Posted October 20, 2012 http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/carboplatinhttp://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/paclitaxel Side effects vary widely for chemo and are largely unpredictable. How are you going to get info? Is there an onc nurse line where you are seen? What if you have side effects--who are you supposed to call? Why did your doctor choose this combo instead of another? I would be concerned at having a doctor who would not communicate well with me before, during, and after chemo (Some side-effects can linger.) Do you have a choice? I know, right? He just didn't want to be bothered answering these questions, even though HE IS MY CHEMO ONCOLOGIST as well as my surgeon. He just kept saying it would all be explained when I go for my first treatment. My sister said if he had said the word protocol one more time, she was going to smack him in the face. Quote Link to comment Share on other sites More sharing options...
AimeeM Posted October 20, 2012 Share Posted October 20, 2012 I have no experience; just wanted to chime in and let you know we're all pulling and praying for you. :grouphug: Quote Link to comment Share on other sites More sharing options...
thescrappyhomeschooler Posted October 20, 2012 Author Share Posted October 20, 2012 http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/carboplatinhttp://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/paclitaxel Side effects vary widely for chemo and are largely unpredictable. How are you going to get info? Is there an onc nurse line where you are seen? What if you have side effects--who are you supposed to call? Why did your doctor choose this combo instead of another? I would be concerned at having a doctor who would not communicate well with me before, during, and after chemo (Some side-effects can linger.) Do you have a choice? These links are very helpful, too. I type stuff in google, then get overwhelmed with all the choices. Thanks for sharing these. Quote Link to comment Share on other sites More sharing options...
tagglelim Posted October 20, 2012 Share Posted October 20, 2012 Hello, I'm a newbie poster, but you have been in my prayers. I have three friends that are also on a regimen of chemotherapy at the moment. Each has a different type of cancer, but similar chemo cycles to yours. Every single one, regardless of what they are actually taking, states that the 2nd-5th days post-chemo are the toughest - the third day being the worst. I'm sorry to state that, but perhaps the knowledge might help you to know when you will need the most assistance (i.e. with the child care). Also, my friends report fatigue that increases with each round of chemo, though they feel much more functional after that first week post-chemo. I don't know how much this helps, but those are things all three have reported. I will keep praying for you!!! :grouphug: Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted October 20, 2012 Share Posted October 20, 2012 I don't know if anyone has mention this to you but see if the center has someone with knowledge in natural medicine. We were told to make sure we used the cast iron with DH to help keep his iron count up to avoid more drugs if at all possible. There was a wonderful lady who helped patients practice de-stressing breathing and visualizing ( unfortunately DH didn't listen to it). Bring some small candies in your purse incase what they have is nasty to you and you just want to get the taste out of your mouth. Get a comfy blanket and bring it as DH found their blankets itchy. On days he felt the worse at home, his doctors recommended smoothies or milkshakes with protein powder to keep up his strength. Quote Link to comment Share on other sites More sharing options...
mathwonk Posted October 20, 2012 Share Posted October 20, 2012 (edited) It should be unacceptable for the doctor to decline to explain as fully as you want what to expect. My wife endured a two year series of treatment with chemo and radiation, but she is a physician and we have access to medical books which outline as much as is known. I myself declined an experimental and unusually aggressive course of chemo after having all the ins and outs and pluses and minuses explained. (My boss had also made me worry that any loss of effectiveness from side effects of the treatment could be held against me in my job evaluation.) My wife's experience was much harder and longer than mine, but suffice it to say we are both all right. Chemo can be quite unpleasant, but it depends on the type, the dose, and the duration, among other things. After it is eventually "over" (for us there are permanent consequences), your survival trumps the temporary unpleasantness. You should make an appointment to have your doctor answer all your questions in detail. Don't take evasion for an answer. Edited October 20, 2012 by mathwonk Quote Link to comment Share on other sites More sharing options...
Catherine Posted October 20, 2012 Share Posted October 20, 2012 My Mom got a taxol-only course of chemo for breast cancer (she was actually in a study comparing taxol alone to traditional chemo for breast cancer), and she had minimal nausea, no weight loss, but she did lose her hair. She also developed neuropathy but elected to complete the long course of chemo-it was about 6 months. Her neuropathy has gradually improved, 6 years out, and she can sew and do needlework again, which is very important to her. Taxol is very good, though, in terms of causing fewer symptoms at the time of the chemo than traditional drugs, and also much less immunosuppression, though that is dependent on the dose. Generally, it's easier to tolerate than most chemo drugs. Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted October 20, 2012 Share Posted October 20, 2012 I know, right? He just didn't want to be bothered answering these questions, even though HE IS MY CHEMO ONCOLOGIST as well as my surgeon. He just kept saying it would all be explained when I go for my first treatment. My sister said if he had said the word protocol one more time, she was going to smack him in the face. I'm serious--do you have a choice of doctors? They are not all like that. I think that's ridiculous not to tell you and to let you wait until the actual day to get info. It really improves the patient's experience to get good solid info. Why Taxol and not Taxotere, for instance? Did you have choices? What will happen that first day? (That will be somewhat similar across facilities, but different in different facilities.) I've not heard of a physician that is both an expert surgeon and an expert oncologist. A lot of surgeons are jerks (they are precision people, not people-people) and researchers , which some oncologists are, can also not be warm and fuzzy. However, you should have been given good solid educational material. For one thing, it cuts down anxiety. One thing that many people worry about that is just not much of an issue now is nausea. The anti-nausea drugs are very good. The cancer.org site has live people who will talk with you. They are "information specialists" not medical providers, but they can answer basic questions. Quote Link to comment Share on other sites More sharing options...
blakereese Posted October 20, 2012 Share Posted October 20, 2012 :grouphug: My sister just went through ovarian cancer treatment. She is doing well now, and went through a similar chemo protocol. I agree with the pp who mentioned that a couple of days after the chemo are the worst. Try to have extra help on those days, you may feel pretty good on the actual day you receive the meds. Have a couple of good friends you can count on during this time. You may need a last minute babysitter, or someone to help with dinner or driving somewhere, or sometimes just a shoulder to cry on. Don't be afraid to call someone, your friends WANT to help you but may not know what to do or how to ask. Have someone outside of your family that you can say anything to (only because sometimes your family will get too upset or will not tell you what you need to hear and in general are just too close, iykwim). And please consider changing doctors. You will have many appts with this person and this is a very serious diagnosis. I would want to have someone who talks to me, tells me everything to expect, answers any questions, is completely honest. My sister had the best doctor who I feel went above and beyond, and that is what you need when you are in such a situation. Is there another doctor in the same practice that you could see? Sometimes you just do not "click" with a doctor or they may be brilliant but not have a good bedside manner...whatever the reason, you deserve someone you are comfortable with and feel like you can talk to. :grouphug: I'm so sorry you are going through this. We are all thinking of you. :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
kitten18 Posted October 21, 2012 Share Posted October 21, 2012 I'm serious--do you have a choice of doctors? They are not all like that. I think that's ridiculous not to tell you and to let you wait until the actual day to get info. It really improves the patient's experience to get good solid info. Why Taxol and not Taxotere, for instance? Did you have choices? What will happen that first day? (That will be somewhat similar across facilities, but different in different facilities.) I've not heard of a physician that is both an expert surgeon and an expert oncologist. A lot of surgeons are jerks (they are precision people, not people-people) and researchers , which some oncologists are, can also not be warm and fuzzy. However, you should have been given good solid educational material. For one thing, it cuts down anxiety. One thing that many people worry about that is just not much of an issue now is nausea. The anti-nausea drugs are very good. The cancer.org site has live people who will talk with you. They are "information specialists" not medical providers, but they can answer basic questions. :iagree: Especially with the bolded!!! Quote Link to comment Share on other sites More sharing options...
DB in NJ Posted October 21, 2012 Share Posted October 21, 2012 You have received great info. Your course of treatment is the same as Mom's. I have nothing to add to what you've been told other than you and your family are in my prayers! :grouphug: Quote Link to comment Share on other sites More sharing options...
mommymonster Posted October 21, 2012 Share Posted October 21, 2012 :grouphug: My son just finished 18 months of weekly chemo on a carboplatin + vincristine protocol. A few things that we learned: Actually getting the infusions wasn't so bad. The bad part was boredom/waiting. Bring amusements to pass the time. Eating was a challenge for my son. If it is a challenge to you (or even if it isn't), I'd recommend the book "The Cancer-Fighting Kitchen" by Rebecca Katz. It was useful for the recipes, as well as the front matter of the book. I have actually loaned the book to a half-dozen friends, neighbors and family members who were going through chemo. All of them found it useful. While your oncologist sounds like a train wreck, don't underestimate how awesomely fabulous the nurses can be. We spent a ton of time with our nurses, and they were marvelously practical. And I have to concur with the others; get an oncologist you are comfortable with. You may have to have some long conversations with the person. Better to be confident and comfortable with him/her. Quote Link to comment Share on other sites More sharing options...
thescrappyhomeschooler Posted October 21, 2012 Author Share Posted October 21, 2012 I've not heard of a physician that is both an expert surgeon and an expert oncologist. Cleveland Clinic has a gynecologic oncology specialty. When I was in the ER and they determined my "mass" needed to be removed, a regular ob/gyn started the surgery. When they determined that it wasn't a cyst and was in fact malignant, the gyn oncologist came down and finished the surgery. Apparently, the gyn oncologists handle the entire gynecologic cancer process from surgery to chemo. Thank you, everyone for all your words of advice and support. I'm learning a lot and starting to feel a little less apprehensive about it. Quote Link to comment Share on other sites More sharing options...
MrsMe Posted October 21, 2012 Share Posted October 21, 2012 I was wondering as well how you were doing. :grouphug: & ((( ))) Quote Link to comment Share on other sites More sharing options...
laundrycrisis Posted October 21, 2012 Share Posted October 21, 2012 You are also in my thoughts. :grouphug: Quote Link to comment Share on other sites More sharing options...
bookfiend Posted October 21, 2012 Share Posted October 21, 2012 (edited) I don't know about the medical side, but here are a few ideas of things to take for the comfort side. I accompanied a friend for her treatment several times. Have you seen where you will receive the treatments? It may suprise you. The cancer center I experienced was set up like a large lounge, in a gentle U-shape with the nurses pod in the middle. There were big lazy-boy chairs in two rows facing each other (maybe 40 or so). Each chair had a small, padded folding-type chair for a companion. You need to take a notebook/computer to record everything that is told to you. If you have someone coming with you, this is a good job for them. Some things that were nice to have: comfy blanket buckwheat neck pillow (also used for lower back) a rice heater buddy (that you microwave, and it gets warm) lavender sachet (if smells make you nauseous) hot, homemade soup in a thermos something sweet, something salty a book of prayers (we read from the valley of vision, a collection of puritan prayers and devotions) music with earphones somthing to keep you hands busy (knitting or such) Most important, an attitude that welcomes the medicine and doesn't fight or fear it. You want your body to accept the meds. Something that was unexpected but logical is that people tend to make their appointments for the same time each session. That meant that by the third round, we made chemo friends. adding my :grouphug:. Edited October 21, 2012 by bookfiend Quote Link to comment Share on other sites More sharing options...
amyrobynne Posted October 21, 2012 Share Posted October 21, 2012 My mom just had her 2nd of 8 bi-weekly chemo sessions for triple-negative breast cancer. She feels pretty good for the 3 days after chemo day, then goes off steroids and gets tired and lethargic for the next week. This time she's taking a laxative because last time she went a week without pooping and feeling terrible, then had 2 days of diarrhea. So far, she's been more regular this time and she seems much more positive largely because of that. She had to force herself to eat during the bad week. Quote Link to comment Share on other sites More sharing options...
umsami Posted October 21, 2012 Share Posted October 21, 2012 I don't know about the medical side, but here are a few ideas of things to take for the comfort side. I accompanied a friend for her treatment several times. Have you seen where you will receive the treatments? It may suprise you. The cancer center I experienced was set up like a large lounge, in a gentle U-shape with the nurses pod in the middle. There were big lazy-boy chairs in two rows facing each other (maybe 40 or so). Each chair had a small, padded folding-type chair for a companion. You need to take a notebook/computer to record everything that is told to you. If you have someone coming with you, this is a good job for them. Some things that were nice to have: comfy blanket buckwheat neck pillow (also used for lower back) a rice heater buddy (that you microwave, and it gets warm) lavender sachet (if smells make you nauseous) hot, homemade soup in a thermos something sweet, something salty a book of prayers (we read from the valley of vision, a collection of puritan prayers and devotions) music with earphones somthing to keep you hands busy (knitting or such) Most important, an attitude that welcomes the medicine and doesn't fight or fear it. You want your body to accept the meds. Something that was unexpected but logical is that people tend to make their appointments for the same time each session. That meant that by the third round, we made chemo friends. adding my :grouphug:. Those are really good ideas. My Dad went through chemo last year. He too mentioned the boredom of the chemo. A lot of times he was there all day. So, maybe you'll want to download some books on mp3, borrow a kindle, etc. Ask if the cancer center has wifi--if so, bring a laptop if you can. Ditto the recommendation on dental work first too. At least go in for a cleaning and tell your dentist what you'll be having done. If they don't have any appointments, explain to the receptionist why you want one, and they might be able to squeeze you in. Ask for a recommendation regarding mouthwash, toothpaste, etc. I remember my Dad used Biotene?Biotin? (something like that)...it's OTC. Rebecca Katz also has a good cook book called "One Bite at a Time." See if your library has it. My Dad's taste buds changed and basically nothing tasted good for him. It was a real struggle to get him to eat and keep weight on. We did a lot of milkshakes. :) Honestly, even if you are at the Cleveland Clinic, I'd still want an oncologist who I can talk to. You might want to talk to the chemo nurses and see who they recommend. :) They might tell you, yes, Dr. X has zero bedside manner, but he makes up for it in outcome... or they might say, well, a lot of people like Dr. Y. Quote Link to comment Share on other sites More sharing options...
SonshineLearner Posted October 21, 2012 Share Posted October 21, 2012 Well, my mom has ovarian cancer. I would tell you..... look for an Naturopathic Oncologist to help your body deal with all the chemo. Of course, you know to eat organic....(especially the "Dirty Dozen") My mom only eats sugar on chemo days for about 20 hours after it starts pumping. She has a port in her arm; it's been very convenient and really helps with the discomfort. She does a whole regimen. I think she'd email you, if you'd like to pm me with your email address. She's dealt with this for a year and a half. Really sorry for you!! Quote Link to comment Share on other sites More sharing options...
KidsHappen Posted October 21, 2012 Share Posted October 21, 2012 My dd was referred to an OB/GYN Oncologist. We had a meeting with him beforehand in which he explained everything and then a meeting again at pre-op. There was at least a week between the two for us to research everything he had told us and he gave us plenty of paperwork with info as well. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted October 21, 2012 Share Posted October 21, 2012 I know, right? He just didn't want to be bothered answering these questions, even though HE IS MY CHEMO ONCOLOGIST as well as my surgeon. He just kept saying it would all be explained when I go for my first treatment. My sister said if he had said the word protocol one more time, she was going to smack him in the face. I like your sister.;) :grouphug::grouphug::grouphug::grouphug::grouphug:I am sorry I have no helpful advice.:grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
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