1st experience with Chemo
The procedures and the expected results have been explained to me. I have done all the research I think I can do. I hate to admit that I still feel scared about these treatments. Any suggestions?
Thanks,
Jean
Comments
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A BIG HUG for Jean!
Hi, Jean!
Sorry to meet you here, but of course we are all sorry to have occasion to meet here!
Although I was a bit nervous about having chemo, I’m glad I wasn’t TOO stressed about it because I found the infusions all in all a very relaxing time. I often fell asleep part way through. Some people, however, have problems. Please be sure to post YOUR experience here so that in the future others can learn from your experience. Rating surgery, chemo, and brachytherapy, for me, surgery was the worst because the pain lasted such a long time. I had open abdominal surgery. Chemo began before I had recovered from surgery. Next worst was my first round of brachytherapy. Extremely painful, but all the pain was gone within a few days. Chemo was not at all painful for me, nor were the last two rounds of brachytherapy.
About half to 2/3 down this first page of posts is the topic: 1st chemo treatment-need help by patty444 first posted 11/14/2009 with the most recent response 11/19/2009 by Linnie. In it several of us discussed our treatment in detail. Then the second to the last topic on this first page of posts is: SALLY: about the brachytherapy. Several of us discussed our brachytherapy experience in some detail. My first round and Deb’s first round were much worse than they should have been. We should have complained more at the time. Inserting and retaining the appliance SHOULD NOT have been extremely painful, just a bit uncomfortable. This topic will probably move to page 2 of the posts within another few days as more new topics are posted.
I had brachytherapy during the 3rd and 4th rounds of chemo. I think the first 2 rounds of brachy were during the 3rd round of chemo with the 3rd brachy during the 4th round of chemo. I did not have a break in my chemo for the brachytherapy but just continued my chemo at 21-day intervals. I was fortunate that my blood counts remained high enough (below normal, mind you, but high enough) to complete all 6 prescribed rounds of chemo without any delays, any transfusions, any additional medications to try to boost my blood counts.
Please tell us more about yourself so we can try to answer your specific questions. Were you born in 1946? :-) Have you had surgery? What type? When? What is your diagnosis? (type of cancer, stage, grade) Do you have a copy of your pathology report? Where are you being treated? Which chemicals are planned for your chemo infusions? How frequently will you be getting infusions? How many rounds? Do you have a port/catheter for administering the chemo? Which type of brachytherapy are you getting? Overnight in the hospital or in and out the same day? How often? How many rounds?
Please continue posting, and thanks for jumping in!
A BIG HUG from Sally0 -
Hi Jean, Sally has given you
Hi Jean, Sally has given you some great information and asks some great questions about your treatment plan. I ordered CDs to listen to which are made specifically for people undergoing chemo therapy. I ordered them from the intranet. I will look and see where I got them from. I had my hysterectomy June 11th (open procedure-not laproscopic). On July 10th I had a port (vascular access device which the chemo goes through instead of through a vein in you hand or arm.) placed in the morning in outpatient surgery and by 11am I was receiving my first chemo treatment through my newly implanted port. I totally understand your anxiousness about chemo. It is normal and you are not alone. Bring a bag with you including things to do while you get your chemo as depending on your drugs you will likely be there for 4-6 hours.
You will probably sit in a recliner chair which will be seperated by a curtain from other recliners. There will be a small TV which you can position to watch if you choose. You will have your blood drawn for labs to ensure that your red blood cells, white blood cells, platelets, magnesium, and potassium levels are high enough for you to get chemo. A specially trained oncology chemo nurse will be assigned to you and will be monitoring you closely for side effects from the chemo. The nurse will tell you the signs and symptoms of side effects. You will have a nurses call button attached to your chair so you can call the nurse anytime. Actually there are so many nurses that walk by your chair that you will feel well cared for. Bring someone with you for support during the chemo...someone can spend an hour or two and then someone else could maybe come to help break up the time for you. You will have a couple IV infusion pumps which will click away as they infuse the chemo drugs-one drug is given at a time. Before the chemo is started the nurse will give you "pre-meds" which could include Decadron (a steroid) and Benadryl to help prevent side effects. The Bendadryl IV will likely give you a feeling of being a little buzzed or maybe sleepy for about an hour...actually a nice relaxing feeling...but it wears off. You will also likely be give another intravenous medication called Aloxi which is a miracle drug in my opinion, as it is an anti-nausea drug ( anti-emetic) and it lasts in your body about 3 to 5 days! I haven't vomited once during or after chemo. On day three post chemo at home I start taking Companzine every 6 hours for about a day and then I am good...no nausea or vomiting. Remember that if you are taking Paxel and Carboplaten can be constipating. I increased my stool softner from 1 to 2 tabs the day before I start my chemo. (This is prior to my having had radiation. Post radation I don't take any stool softeners as the opposite happens to your bowels with radiation (diarrhea). Depending on how much you have recovered from surgery your body will handle your first chemo differently than say your 4th chemo. I had chemo every 3 weeks for 3 times then had my 25 external radiation treatments and 3 internal brachytherapy radiation, then waited 3 weeks and started my 4th chemo and will have my 5th chemo Dec. 11th and the last one Dec. 30th. For me my first chemo was the toughest because I had my surgery just 4 weeks before and also had surgery for my port (vascular access device) placed the morning of my first chemo. Things to bring with you might include: Ipod, Portable CD player, Cross word puzzle, knitting, book to read, paperwork to look through, deck of cards. The infusion center will have beverages and snacks for you and your family or friend who may accompany you. They can sit right next to you the whole time. Wear comforable clothes like warm-up pants and a top where they can either access your port easily or access your arms for IV. There are bathrooms easily accessible for you with your IV pumps. The IV pumps just unplug from the outlet in the wall and you are ready to roll. After my chemo I went home and felt a little tired. On day two I felt OK I think from the Decadron which gave me energy. On day three I spent in bed but everyone is different. Basically within about 4 or 5 days I was feeling pretty good but fatigued. I don't think anyone can really understand what all this chemo and radiation feels like unless they have traveled the journey. Sending positive thoughts to you!0 -
Normal
You are entirely normal to feel scared even though you have done everything you can to prepare yourself. This journey is very scary... I think you will soon find out that chemo will probably not be as bad as you might anticipate. Don't get me wrong, it is certainly not fun or a walk in the park, but if you are like me, it wasn't as bad as a made it out to be in my mind. It is very "doable." If I might offer a bit of advice... don't try to be a hero and "tough out" the side effects. Let your doctor know what troubles you. There are meds and measures to help you through chemo. Perhaps the best advice I might offer is take measures to decrease constipation. Lots of fluids, I used colace which is over the counter and Miralax was my best friend.
Good luck.0 -
1st Chemo Treatmentkansasgal said:A BIG HUG for Jean!
Hi, Jean!
Sorry to meet you here, but of course we are all sorry to have occasion to meet here!
Although I was a bit nervous about having chemo, I’m glad I wasn’t TOO stressed about it because I found the infusions all in all a very relaxing time. I often fell asleep part way through. Some people, however, have problems. Please be sure to post YOUR experience here so that in the future others can learn from your experience. Rating surgery, chemo, and brachytherapy, for me, surgery was the worst because the pain lasted such a long time. I had open abdominal surgery. Chemo began before I had recovered from surgery. Next worst was my first round of brachytherapy. Extremely painful, but all the pain was gone within a few days. Chemo was not at all painful for me, nor were the last two rounds of brachytherapy.
About half to 2/3 down this first page of posts is the topic: 1st chemo treatment-need help by patty444 first posted 11/14/2009 with the most recent response 11/19/2009 by Linnie. In it several of us discussed our treatment in detail. Then the second to the last topic on this first page of posts is: SALLY: about the brachytherapy. Several of us discussed our brachytherapy experience in some detail. My first round and Deb’s first round were much worse than they should have been. We should have complained more at the time. Inserting and retaining the appliance SHOULD NOT have been extremely painful, just a bit uncomfortable. This topic will probably move to page 2 of the posts within another few days as more new topics are posted.
I had brachytherapy during the 3rd and 4th rounds of chemo. I think the first 2 rounds of brachy were during the 3rd round of chemo with the 3rd brachy during the 4th round of chemo. I did not have a break in my chemo for the brachytherapy but just continued my chemo at 21-day intervals. I was fortunate that my blood counts remained high enough (below normal, mind you, but high enough) to complete all 6 prescribed rounds of chemo without any delays, any transfusions, any additional medications to try to boost my blood counts.
Please tell us more about yourself so we can try to answer your specific questions. Were you born in 1946? :-) Have you had surgery? What type? When? What is your diagnosis? (type of cancer, stage, grade) Do you have a copy of your pathology report? Where are you being treated? Which chemicals are planned for your chemo infusions? How frequently will you be getting infusions? How many rounds? Do you have a port/catheter for administering the chemo? Which type of brachytherapy are you getting? Overnight in the hospital or in and out the same day? How often? How many rounds?
Please continue posting, and thanks for jumping in!
A BIG HUG from Sally
WOW...Sally thank you for your great response. Thank you to all of you that responded to me. This is what I was looking for without even knowing it! I was very hesitant about participating since my cancer has been removed now and everyone else seems to be going through so much more than me.
I was diagnosed on Sept. 13,2009. The "journey" began with the "tests", X-rays, blood draws, Ultrasound, CT scan and finally a PET scan. My uterine cancer is "carcinosarcoma" Grade 4. It is considered a very aggressive cancer. It is also a "rare" cancer and not much is known about what works. I had a full hysterectomy (all of it!!) on Oct. 1, 2009. It was only found in my uterus. None was found in my lymph nodes. I received a 1C stage.
Since this cancer is aggressive and appears to like organs, I will be receiving 6 to 8 Chemo treatments. They will be 3 times a week, with a 2 week rest period. I have been assured that this schedule will be adjusted according to my side affects. The two drugs that are being used are: Ifosfamide and Taxol.
I will be having out patient brachytherapy in between my 2nd and 3rd Chemo treatments. They will be once a week for three weeks straight. It will have a tube inserted and positioned at the site which has the most reoccurances.
I will definitely read your suggested posts. I have this need to know all I can on this entire subject. I am grateful to have found you all!
Jean0 -
Ifosfamide and Taxol Clinical Trial?jean1946 said:1st Chemo Treatment
WOW...Sally thank you for your great response. Thank you to all of you that responded to me. This is what I was looking for without even knowing it! I was very hesitant about participating since my cancer has been removed now and everyone else seems to be going through so much more than me.
I was diagnosed on Sept. 13,2009. The "journey" began with the "tests", X-rays, blood draws, Ultrasound, CT scan and finally a PET scan. My uterine cancer is "carcinosarcoma" Grade 4. It is considered a very aggressive cancer. It is also a "rare" cancer and not much is known about what works. I had a full hysterectomy (all of it!!) on Oct. 1, 2009. It was only found in my uterus. None was found in my lymph nodes. I received a 1C stage.
Since this cancer is aggressive and appears to like organs, I will be receiving 6 to 8 Chemo treatments. They will be 3 times a week, with a 2 week rest period. I have been assured that this schedule will be adjusted according to my side affects. The two drugs that are being used are: Ifosfamide and Taxol.
I will be having out patient brachytherapy in between my 2nd and 3rd Chemo treatments. They will be once a week for three weeks straight. It will have a tube inserted and positioned at the site which has the most reoccurances.
I will definitely read your suggested posts. I have this need to know all I can on this entire subject. I am grateful to have found you all!
Jean
Hi, Jean!
Are you participating in the clinical trial evaluating the difference in response between treatment with Ifosfamide/Taxol and treatment with Carboplatin/Taxol? I'm sure I read about a study which was about to begin for patients with a history of carcinosarcoma. Please be sure to post your experience with Ifosfamide and Taxol. Indeed carcinosarcoma is rare and much more research is needed to determine the best treatment protocol.
I forgot to mention that generic Imodium was my buddy during days 3-6 of week 1 of each round of chemo. The first couple of days constipation was a problem, but that quickly gave way to diarrhea. The last two weeks my bowels seemed to gradually settle down. Then it was time for another round of chemo! I did take prescribed anti-nausea medication and a steroid for 3 days following each round of chemo. Although I experienced some nausea and increased heartburn, I never vomited.
During the months of chemo I never went to the grocery store, to a school, to a restaurant, to church, to a meeting, or to a public performance. I occasionally went to the office but only at night for 2 or 3 hours while other employees were at home for the night. I tried my best not to be in a situation where I could pick up a bacterial or viral infection. I visited with my friends by telephone and e-mail. Except for my chemo side-effects, I remained very healthy during my slow recovery from the hysterectomy surgery.
My UPSC was treated with Carboplatin and Taxol infusions 1 day every 3 weeks. It looks like you will be spending a lot more time in the recliner than I did. Are you receiving chemo at a cancer center where you can mingle with other cancer patients? I was treated in a room by myself at my gyn/oncologist's office. My daughter stayed with me during my treatments. We would chat for a while and then I would drift off to sleep from the Benadryl in the IV which preceded the Taxol and Carboplatin. She would read or nap. There was a TV available, but we did not turn it on. No snacks. That could have been nice!
I'll be watching for your posts - maybe one by this coming weekend??
Hang in there!
More hugs from Sally0 -
Can't Add Muchdeanna14 said:Normal
You are entirely normal to feel scared even though you have done everything you can to prepare yourself. This journey is very scary... I think you will soon find out that chemo will probably not be as bad as you might anticipate. Don't get me wrong, it is certainly not fun or a walk in the park, but if you are like me, it wasn't as bad as a made it out to be in my mind. It is very "doable." If I might offer a bit of advice... don't try to be a hero and "tough out" the side effects. Let your doctor know what troubles you. There are meds and measures to help you through chemo. Perhaps the best advice I might offer is take measures to decrease constipation. Lots of fluids, I used colace which is over the counter and Miralax was my best friend.
Good luck.
The Benadryl they gave me prior to the chemo made me sleepy and I slept through much of the procedure. The room was pretty cool - I had MRSA - and was isolated so I brought a blanket and just snuggled in. I too experienced the third day miseries and the constipation. Glad they came up with Miralax. I lost my hair two weeks to the day of my first treatment. That was in July and it is just beginning to come back very slowly.0 -
Right on the mark!Northwoodsgirl said:Hi Jean, Sally has given you
Hi Jean, Sally has given you some great information and asks some great questions about your treatment plan. I ordered CDs to listen to which are made specifically for people undergoing chemo therapy. I ordered them from the intranet. I will look and see where I got them from. I had my hysterectomy June 11th (open procedure-not laproscopic). On July 10th I had a port (vascular access device which the chemo goes through instead of through a vein in you hand or arm.) placed in the morning in outpatient surgery and by 11am I was receiving my first chemo treatment through my newly implanted port. I totally understand your anxiousness about chemo. It is normal and you are not alone. Bring a bag with you including things to do while you get your chemo as depending on your drugs you will likely be there for 4-6 hours.
You will probably sit in a recliner chair which will be seperated by a curtain from other recliners. There will be a small TV which you can position to watch if you choose. You will have your blood drawn for labs to ensure that your red blood cells, white blood cells, platelets, magnesium, and potassium levels are high enough for you to get chemo. A specially trained oncology chemo nurse will be assigned to you and will be monitoring you closely for side effects from the chemo. The nurse will tell you the signs and symptoms of side effects. You will have a nurses call button attached to your chair so you can call the nurse anytime. Actually there are so many nurses that walk by your chair that you will feel well cared for. Bring someone with you for support during the chemo...someone can spend an hour or two and then someone else could maybe come to help break up the time for you. You will have a couple IV infusion pumps which will click away as they infuse the chemo drugs-one drug is given at a time. Before the chemo is started the nurse will give you "pre-meds" which could include Decadron (a steroid) and Benadryl to help prevent side effects. The Bendadryl IV will likely give you a feeling of being a little buzzed or maybe sleepy for about an hour...actually a nice relaxing feeling...but it wears off. You will also likely be give another intravenous medication called Aloxi which is a miracle drug in my opinion, as it is an anti-nausea drug ( anti-emetic) and it lasts in your body about 3 to 5 days! I haven't vomited once during or after chemo. On day three post chemo at home I start taking Companzine every 6 hours for about a day and then I am good...no nausea or vomiting. Remember that if you are taking Paxel and Carboplaten can be constipating. I increased my stool softner from 1 to 2 tabs the day before I start my chemo. (This is prior to my having had radiation. Post radation I don't take any stool softeners as the opposite happens to your bowels with radiation (diarrhea). Depending on how much you have recovered from surgery your body will handle your first chemo differently than say your 4th chemo. I had chemo every 3 weeks for 3 times then had my 25 external radiation treatments and 3 internal brachytherapy radiation, then waited 3 weeks and started my 4th chemo and will have my 5th chemo Dec. 11th and the last one Dec. 30th. For me my first chemo was the toughest because I had my surgery just 4 weeks before and also had surgery for my port (vascular access device) placed the morning of my first chemo. Things to bring with you might include: Ipod, Portable CD player, Cross word puzzle, knitting, book to read, paperwork to look through, deck of cards. The infusion center will have beverages and snacks for you and your family or friend who may accompany you. They can sit right next to you the whole time. Wear comforable clothes like warm-up pants and a top where they can either access your port easily or access your arms for IV. There are bathrooms easily accessible for you with your IV pumps. The IV pumps just unplug from the outlet in the wall and you are ready to roll. After my chemo I went home and felt a little tired. On day two I felt OK I think from the Decadron which gave me energy. On day three I spent in bed but everyone is different. Basically within about 4 or 5 days I was feeling pretty good but fatigued. I don't think anyone can really understand what all this chemo and radiation feels like unless they have traveled the journey. Sending positive thoughts to you!
I just finished my 1st Chemo treatment. You described my experience exactly! I was in treatment from 9:30am to 4:00pm. I received education for at least a hour of that time from my oncology chemo nurse. I was given a packet of information about my Chemo treatment. She also gave me a complete schedule with dates and times. Like you, I got a steroid and the Benadryl. I got sleepy, but of course waking up every hour during the previous night might have had something to do with it. All in all, it was an OK experience.
I just want to say "Thank You" for all the good information that you provided. It really helped. When I walked into the Chemo Infusion Center and saw exactly what you described, I immediately started to relax. Thank you for helping me and sharing my journey.0
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