Please, does anyone know anything about cisplatin and ifosfamide chemo treatment??
I would really like to hear from them. It seems tougher then most, I am supposed to be in the hospital for four to five days every time they administer it because of nausea, toxic effects, and possible "disorientation"!! I was diagnosed with malignant mixed mullerian tumor , underwent full hysterectomy, lymph nodes were clear, but a few "small spots" were found outside. This is the chemo treatment recommended, probably followed up with radiation. They say you have to fight fire with fire, but I'm not looking forward to this and am trying to do all the research I can. Thank you so much, any one who has anything to share! Wingsoflight
Comments
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I'm sorry!
I am sorry that you are having to go through this. I wish I had information for you, but I don't. Perhaps if you go to the search bar in the upper right corner and search cisplatin and ifosfamide, you can fine previous posts about these drugs. God Bless you!0 -
Raising my hand!
I just completed this treatment at the end of March. I was in the hospital for 4 days for each chemo treatment. I'd check in on a Wednesday and I'd leave after the last day later Saturday afternoon every 28 days. I did the "sandwich" with radiation between.
When I arrived, initially I would be hooked up to hydration, then the chemo meds, and then I stayed on hydration. The next day later in the morning the chemo would start again (I was on hydration over night so there was no need to restart that).
My urine output was monitered, so there was a "hat" in the toilet. I'd let the nurses know when it was full and they would test it to make sure no additional meds were necessary to protect my bladder.
Like all chemo, I think everyone reacts differently to the antinausea meds and will have an easier (or harder) time of it. I found focusing was difficult so I didn't bring any books but I pass time with the tv remote, magazines, my laptop, and iPod (and napping).
I understand from my doctor that this treatment used to be done outpatient, but then it was decided inpatient was safter for the patient so they could be monitored more easily as well as making sure they were constanty hydrated to protect the bladder.
I was an *excellent* water drinker during treatment and tolerated each course well so they did let me do my final round as an outpatient.
I'd be happy to answer anything else I can about it. **Hugs for you** I totally understand your fear about this.
-Kat0 -
Raising my handKatrinka123 said:Raising my hand!
I just completed this treatment at the end of March. I was in the hospital for 4 days for each chemo treatment. I'd check in on a Wednesday and I'd leave after the last day later Saturday afternoon every 28 days. I did the "sandwich" with radiation between.
When I arrived, initially I would be hooked up to hydration, then the chemo meds, and then I stayed on hydration. The next day later in the morning the chemo would start again (I was on hydration over night so there was no need to restart that).
My urine output was monitered, so there was a "hat" in the toilet. I'd let the nurses know when it was full and they would test it to make sure no additional meds were necessary to protect my bladder.
Like all chemo, I think everyone reacts differently to the antinausea meds and will have an easier (or harder) time of it. I found focusing was difficult so I didn't bring any books but I pass time with the tv remote, magazines, my laptop, and iPod (and napping).
I understand from my doctor that this treatment used to be done outpatient, but then it was decided inpatient was safter for the patient so they could be monitored more easily as well as making sure they were constanty hydrated to protect the bladder.
I was an *excellent* water drinker during treatment and tolerated each course well so they did let me do my final round as an outpatient.
I'd be happy to answer anything else I can about it. **Hugs for you** I totally understand your fear about this.
-Kat
Kat
Thank you so much for answering!! I'm not the only one!! All that you told me was very helpful. Mental preparation is so important, and fearing what you don't know isn't helpful. It sounds like the nausea wasn't too bad. And your tolerance of the medications
as well. What about disorientation or hallucinations? My doctor said that was also a consideration for having people in the hospital. I'll be the best water drinker! Especially if that means I might be able to do one at home! No one said anything about that possibility.
If you don't mind me asking, (you can tell I am new at this), what type of cancer were you being treated for? What about radiation effects? Is it true that you won't lose all of your hair? Is there anything else I should be aware of?
Thank you again so much for answering! I am grateful to have found this discussion
board. If there are any other discussion boards that might be helpful that you know about I would really appreciate knowing about them as well.
Bless you and **Hugs for you** Wingsoflight, Glenda0 -
Thank you - I'm sorry!deanna14 said:I'm sorry!
I am sorry that you are having to go through this. I wish I had information for you, but I don't. Perhaps if you go to the search bar in the upper right corner and search cisplatin and ifosfamide, you can fine previous posts about these drugs. God Bless you!
I appreciate every answer and comment. Yes, I'll search there right now!
God Bless you! wingsoflight, Glenda0 -
Glenda,wingsoflight said:Raising my hand
Kat
Thank you so much for answering!! I'm not the only one!! All that you told me was very helpful. Mental preparation is so important, and fearing what you don't know isn't helpful. It sounds like the nausea wasn't too bad. And your tolerance of the medications
as well. What about disorientation or hallucinations? My doctor said that was also a consideration for having people in the hospital. I'll be the best water drinker! Especially if that means I might be able to do one at home! No one said anything about that possibility.
If you don't mind me asking, (you can tell I am new at this), what type of cancer were you being treated for? What about radiation effects? Is it true that you won't lose all of your hair? Is there anything else I should be aware of?
Thank you again so much for answering! I am grateful to have found this discussion
board. If there are any other discussion boards that might be helpful that you know about I would really appreciate knowing about them as well.
Bless you and **Hugs for you** Wingsoflight, Glenda
No one mentioned
Glenda,
No one mentioned disorientation to me! (tho it may have been in the literature and I was so fixated on the other possibilities I didn't give it much attention). I wasn't disorientated and I didn't hallucinate. I did have trouble focusing, I would not have wanted to make large financial decisions or life altering plans and things like that while on the drugs, but no hallucinating. When I returned home, my husband had to be in charge of what drugs I took until Monday morning when I could take over (I'd arrive home late Saturday afternoon). My brain was very foggy. I made sure I had all household paperwork and bills under control before I went in due to the lasting "fog" when I returned home.
I hesitate to share my exact side effects b/c yours could very well be different. I was fairly sick while I was in the hospital, but I was also told, I didn't react as nicely to the anti nausea drugs as most do. Eventually, we did figure out the best way to combat the nausea, I recognized earlier that the nausea was on its way - and the nurses reacted swiftly with the meds. I discovered, while I didn't feel like eating, it helped to have something in my stomach, so I made sure I ate regular meals while in the hospital.
My best advise to prep for the treatment would be to eat as high fiber as you can, the week before. Constipation was a HUGE problem for me - it was like no other constipation that I have ever experienced. I learned that I needed to ask for a stool softener while I was in the hospital and continued to take them when I returned home. (Perhaps a little too much sharing, but I normally did not have a bowel movement while in the hospital and perhaps not even days after, insult to injury while dealing with all of the other issues!) Hospital food is not really helpful in the high fiber department, but I made sure there were lots of high fiber foods on hand when I got home to try to get back on track. Oddly enough, when my constipation issues cleared so did my fog brain. I hate the idea that my bowels are somehow connected to my brain, but they both cleared at the same time! LOL
By Monday my nausea was really pretty much gone as long as I ate regular meals. I was left with fog brain and a lot of sleeplessness. I really had a hard time sleeping at night or staying asleep. That (along with the constipation) was all I was dealing with by Monday.
I did lose all of my hair. The literature lead me to believe that I might keep some or most of it, but exactly at week three it all came out. The chemo nurse I spoke to at my first appointment before chemo was pretty plain that I'd lose it - but I liked going to my place of denial and didn't listen.
) It was really the hardest part for me (as difficult as the chemo was). During this process I learned that I am a very private person and opted to only share what I was going through with a very small circle of friends. I felt like my wig screamed I AM BALD! I AM BALD! I'M BEING TREATED FOR CANCER! - but no one knew and complimented me over and over on my new hairstyle lol. I so admire the women who wear their scarves or bald heads bravely and proudly, and I wanted to be one of them, but I'm not as much as I tried. Losing my hair really tore me down. I hope you are one who can do hair loss (if it happens to you!) with more dignity than I did - I think it's much healthier.
For me, radiation was a piece of cake and a nice reprieve from the chemo. I had very few side effects. I didn't even suffer the diarrhea that was a possibility (I changed my diet somewhat and ate very little fiber). At about the halfway point I had a metallic taste in my mouth, but that was it. I don't know if you are doing the "sandwich" or finishing up with radiation, but my hair grew back during that time - so I had the pleasure of having it fall out again! (Perhaps an opportunity for me to work on my vanity issues again lol).
Out patient treatment was really not an option until the very end for me - and only b/c I told my Dr. I didn't really think I wanted to go for the last round, ;o) I was tired of going to the hospital, my youngest son (who was only 7.5 when I started all of this) was having a really hard time with me being away. My body had tolerated all of the meds well, all of my vitals were always good during my treatments, and my urine always clear of problems when tested (and as I said I had been a proven excellent water drinker) so after some additional approvals they let me do it. I could tell the chemo nurses in the clinic were not all that thrilled with the decision, but they were still very nice to me.
It is my understanding that this type of chemo is a preventative course for very aggressive cancers (as you said, fighting fire with equal fire). My cancer had been found in two lymph nodes that were removed, but had not spread beyond my uterus to other organs. The doctor did remove my cervix, ovaries and "a little big of vagina" during my surgery, all were clear.
This is my only foray into discussion boards - and I only *just joined. When I was first diagnosed I hit the internet and w/in the first 5 minutes I had read over and over only very grim and horrible news and promised myself I'd stay away from the internet where my cancer was concerned. Any information I had found was not helping me. Perhaps others will have suggestions for you.
I hope each day gives you more and more strength for your fight! When is your first treatment to start? I will be happy to answer whatever I can!
-Kat0 -
Thank you for sharing !Katrinka123 said:Glenda,
No one mentioned
Glenda,
No one mentioned disorientation to me! (tho it may have been in the literature and I was so fixated on the other possibilities I didn't give it much attention). I wasn't disorientated and I didn't hallucinate. I did have trouble focusing, I would not have wanted to make large financial decisions or life altering plans and things like that while on the drugs, but no hallucinating. When I returned home, my husband had to be in charge of what drugs I took until Monday morning when I could take over (I'd arrive home late Saturday afternoon). My brain was very foggy. I made sure I had all household paperwork and bills under control before I went in due to the lasting "fog" when I returned home.
I hesitate to share my exact side effects b/c yours could very well be different. I was fairly sick while I was in the hospital, but I was also told, I didn't react as nicely to the anti nausea drugs as most do. Eventually, we did figure out the best way to combat the nausea, I recognized earlier that the nausea was on its way - and the nurses reacted swiftly with the meds. I discovered, while I didn't feel like eating, it helped to have something in my stomach, so I made sure I ate regular meals while in the hospital.
My best advise to prep for the treatment would be to eat as high fiber as you can, the week before. Constipation was a HUGE problem for me - it was like no other constipation that I have ever experienced. I learned that I needed to ask for a stool softener while I was in the hospital and continued to take them when I returned home. (Perhaps a little too much sharing, but I normally did not have a bowel movement while in the hospital and perhaps not even days after, insult to injury while dealing with all of the other issues!) Hospital food is not really helpful in the high fiber department, but I made sure there were lots of high fiber foods on hand when I got home to try to get back on track. Oddly enough, when my constipation issues cleared so did my fog brain. I hate the idea that my bowels are somehow connected to my brain, but they both cleared at the same time! LOL
By Monday my nausea was really pretty much gone as long as I ate regular meals. I was left with fog brain and a lot of sleeplessness. I really had a hard time sleeping at night or staying asleep. That (along with the constipation) was all I was dealing with by Monday.
I did lose all of my hair. The literature lead me to believe that I might keep some or most of it, but exactly at week three it all came out. The chemo nurse I spoke to at my first appointment before chemo was pretty plain that I'd lose it - but I liked going to my place of denial and didn't listen.) It was really the hardest part for me (as difficult as the chemo was). During this process I learned that I am a very private person and opted to only share what I was going through with a very small circle of friends. I felt like my wig screamed I AM BALD! I AM BALD! I'M BEING TREATED FOR CANCER! - but no one knew and complimented me over and over on my new hairstyle lol. I so admire the women who wear their scarves or bald heads bravely and proudly, and I wanted to be one of them, but I'm not as much as I tried. Losing my hair really tore me down. I hope you are one who can do hair loss (if it happens to you!) with more dignity than I did - I think it's much healthier.
For me, radiation was a piece of cake and a nice reprieve from the chemo. I had very few side effects. I didn't even suffer the diarrhea that was a possibility (I changed my diet somewhat and ate very little fiber). At about the halfway point I had a metallic taste in my mouth, but that was it. I don't know if you are doing the "sandwich" or finishing up with radiation, but my hair grew back during that time - so I had the pleasure of having it fall out again! (Perhaps an opportunity for me to work on my vanity issues again lol).
Out patient treatment was really not an option until the very end for me - and only b/c I told my Dr. I didn't really think I wanted to go for the last round, ;o) I was tired of going to the hospital, my youngest son (who was only 7.5 when I started all of this) was having a really hard time with me being away. My body had tolerated all of the meds well, all of my vitals were always good during my treatments, and my urine always clear of problems when tested (and as I said I had been a proven excellent water drinker) so after some additional approvals they let me do it. I could tell the chemo nurses in the clinic were not all that thrilled with the decision, but they were still very nice to me.
It is my understanding that this type of chemo is a preventative course for very aggressive cancers (as you said, fighting fire with equal fire). My cancer had been found in two lymph nodes that were removed, but had not spread beyond my uterus to other organs. The doctor did remove my cervix, ovaries and "a little big of vagina" during my surgery, all were clear.
This is my only foray into discussion boards - and I only *just joined. When I was first diagnosed I hit the internet and w/in the first 5 minutes I had read over and over only very grim and horrible news and promised myself I'd stay away from the internet where my cancer was concerned. Any information I had found was not helping me. Perhaps others will have suggestions for you.
I hope each day gives you more and more strength for your fight! When is your first treatment to start? I will be happy to answer whatever I can!
-Kat
Kat
I am writing this for my wife because she is already asleep. I just got back from a two day trip and looked at the computer. You really gave us a lot more information that will really be helpful on all aspects of the treatment. THANK YOU! Glenda will really appreciate learning more too, though not about the hair loss I am sure. I just wanted to reply so you would know we are reading your responses, and I know she will have a lot to write back to you about. Eric0 -
Message for Katwingsoflight said:Thank you for sharing !
Kat
I am writing this for my wife because she is already asleep. I just got back from a two day trip and looked at the computer. You really gave us a lot more information that will really be helpful on all aspects of the treatment. THANK YOU! Glenda will really appreciate learning more too, though not about the hair loss I am sure. I just wanted to reply so you would know we are reading your responses, and I know she will have a lot to write back to you about. Eric
Dear Kat
I am sorry this reply is so late. Things have been busy, but I also have to wait for my husband, because I have not learned how to get all this computer stuff figured out by myself yet. THANK YOU again for your response, for sharing your story and for being so helpful. You must be very young. Having a 7 yr. old to love is enough to make you well and also cause great concern.
I agree about not wanting to hear all the scary stories. I believe in positive thinking, visualization and a holistic approach. I know I must also have the chemo and radiation, which is the most challenging thing to think about after you have had the cancer diagnosis. It has been helpful to hear from someone who has been through this regime. Now I will prepare to lose my long hair, prepare snacks for the hospital for constipation. It was helpful to know to expect that.
How was your energy during treatment and the weeks afterward: Were you able to take supplements (vitamins, protein powders) into the hospital? I am doing some strong supplements to boost my immune system. I delayed the chemo for a month because of the alternative things I am doing and I wanted to feel stronger after the total hysterectomy.
We had just moved back from Florida when I was diagnosed, looking for a place to live and starting jobs. Obviously I couldn't start mine, because I am a kindergarten teacher. Now I must wait. I have a 5 year old grandson that I have been very close to. I took care of him for 4 1/2 yrs. I am concerned for him to see me go through the changes because Grammy has always been the one who could do everything. How has your son adjusted to your treatments? My close friends live in another city 1 hour away, but thankfully my sister is coming to live with us, (which was planned before anyway). We are very close, she is a breast cancer survivor of 10 years. She did not have chemo, just radiation.
Right now, I think I will have radiation after chemo. Did you have to keep your chemo port in when you stopped your cycle of treatments? I will have my port put in Aug. 4th and start treatments a few days later.
I really appreciate all that you have shared with us, and if there is anything else that you recall from your treatment and would like to share with me, that would be great. I would like to stay in touch with you if that is OK. There is a great book by Dr. Andrew Weil called, "Treating Cancer: Integrative Medicine" I have a lot of faith in his healing holistic approach to medical practice.
You certainly are not vain for feeling so sad about losing your hair. For women it is a symbol of so many things, especially in this country.
Take care, and all blessings, Glenda
P.S. Yes I am still very anxious, depressed, and angry. I will be glad when treatment is complete!0 -
I agree. I'm also practicing integrative medicinewingsoflight said:Message for Kat
Dear Kat
I am sorry this reply is so late. Things have been busy, but I also have to wait for my husband, because I have not learned how to get all this computer stuff figured out by myself yet. THANK YOU again for your response, for sharing your story and for being so helpful. You must be very young. Having a 7 yr. old to love is enough to make you well and also cause great concern.
I agree about not wanting to hear all the scary stories. I believe in positive thinking, visualization and a holistic approach. I know I must also have the chemo and radiation, which is the most challenging thing to think about after you have had the cancer diagnosis. It has been helpful to hear from someone who has been through this regime. Now I will prepare to lose my long hair, prepare snacks for the hospital for constipation. It was helpful to know to expect that.
How was your energy during treatment and the weeks afterward: Were you able to take supplements (vitamins, protein powders) into the hospital? I am doing some strong supplements to boost my immune system. I delayed the chemo for a month because of the alternative things I am doing and I wanted to feel stronger after the total hysterectomy.
We had just moved back from Florida when I was diagnosed, looking for a place to live and starting jobs. Obviously I couldn't start mine, because I am a kindergarten teacher. Now I must wait. I have a 5 year old grandson that I have been very close to. I took care of him for 4 1/2 yrs. I am concerned for him to see me go through the changes because Grammy has always been the one who could do everything. How has your son adjusted to your treatments? My close friends live in another city 1 hour away, but thankfully my sister is coming to live with us, (which was planned before anyway). We are very close, she is a breast cancer survivor of 10 years. She did not have chemo, just radiation.
Right now, I think I will have radiation after chemo. Did you have to keep your chemo port in when you stopped your cycle of treatments? I will have my port put in Aug. 4th and start treatments a few days later.
I really appreciate all that you have shared with us, and if there is anything else that you recall from your treatment and would like to share with me, that would be great. I would like to stay in touch with you if that is OK. There is a great book by Dr. Andrew Weil called, "Treating Cancer: Integrative Medicine" I have a lot of faith in his healing holistic approach to medical practice.
You certainly are not vain for feeling so sad about losing your hair. For women it is a symbol of so many things, especially in this country.
Take care, and all blessings, Glenda
P.S. Yes I am still very anxious, depressed, and angry. I will be glad when treatment is complete!
I have Dr. Weil's and Dr. Rossman's guided imagery CDs. Awesome stuff. And the book "Getting Well Again" by Carl Simonton is a classic in the field. Both of these have helped me immensely in my treatment.
Stay positive and Best wishes to all. Mary Ann0 -
Happy to hear from you Glenda!wingsoflight said:Message for Kat
Dear Kat
I am sorry this reply is so late. Things have been busy, but I also have to wait for my husband, because I have not learned how to get all this computer stuff figured out by myself yet. THANK YOU again for your response, for sharing your story and for being so helpful. You must be very young. Having a 7 yr. old to love is enough to make you well and also cause great concern.
I agree about not wanting to hear all the scary stories. I believe in positive thinking, visualization and a holistic approach. I know I must also have the chemo and radiation, which is the most challenging thing to think about after you have had the cancer diagnosis. It has been helpful to hear from someone who has been through this regime. Now I will prepare to lose my long hair, prepare snacks for the hospital for constipation. It was helpful to know to expect that.
How was your energy during treatment and the weeks afterward: Were you able to take supplements (vitamins, protein powders) into the hospital? I am doing some strong supplements to boost my immune system. I delayed the chemo for a month because of the alternative things I am doing and I wanted to feel stronger after the total hysterectomy.
We had just moved back from Florida when I was diagnosed, looking for a place to live and starting jobs. Obviously I couldn't start mine, because I am a kindergarten teacher. Now I must wait. I have a 5 year old grandson that I have been very close to. I took care of him for 4 1/2 yrs. I am concerned for him to see me go through the changes because Grammy has always been the one who could do everything. How has your son adjusted to your treatments? My close friends live in another city 1 hour away, but thankfully my sister is coming to live with us, (which was planned before anyway). We are very close, she is a breast cancer survivor of 10 years. She did not have chemo, just radiation.
Right now, I think I will have radiation after chemo. Did you have to keep your chemo port in when you stopped your cycle of treatments? I will have my port put in Aug. 4th and start treatments a few days later.
I really appreciate all that you have shared with us, and if there is anything else that you recall from your treatment and would like to share with me, that would be great. I would like to stay in touch with you if that is OK. There is a great book by Dr. Andrew Weil called, "Treating Cancer: Integrative Medicine" I have a lot of faith in his healing holistic approach to medical practice.
You certainly are not vain for feeling so sad about losing your hair. For women it is a symbol of so many things, especially in this country.
Take care, and all blessings, Glenda
P.S. Yes I am still very anxious, depressed, and angry. I will be glad when treatment is complete!
Am I young? Well, I was of "advanced maternal age" according to my OB when I had my son at 39, but apparently when diagnosed with uterine cancer at 46 I am considered "young" *grin*.
My younger son was really wonderful with all of the info I had to give him. He did so well, I was so very proud of him. I was very concerned about how he was going to feel about my hair. I had very curly hair that he loved to sit and twirl and play with while we'd sit and read or watch tv or snuggle.
Neither son (I also have a teen) said anything to me my first morning after it started to happen (I put a scarf on my head to keep my hair from shedding everywhere!) After he returned home from school he put his little and on my hand and said he was sorry about my hair, that he thought it must be very hard. I said yes, it was - and then we played UNO.
At bedtime I thanked him for his nice words to me after school, that they really helped. He said - Mom, it's only hair and it will grow back. What matters is what is on the inside, and that's still the same. He was 7 1/2 at the time. I think you will be very pleasantly surprised by how your grandson reacts to you.
I think all things considered, I did really well. The sleeplessness was really what kept me from getting back to normal right away, not nausea. About day 10 or 12 when my counts were lowest I was really tired - and then like magic I woke up the next day with so much energy! I'd arrive home from the hospital on Saturday and on Sunday I was doing little things around the house - I actually told my husband not to do the laundry while I was in the hospital because it was a good and "normal" task and it felt good to do it. My girlfriends did bring meals from Saturday night until Wednesday night. I wasn't too ill to cook from Sunday on - I was mostly pretty scatterbrained.
I didn't bring any suppliments with me to the hospital, or take anything other than my usual multivitamin and calcium (tho not while I was in the hospital). I don't see why it would be a problem taking them while you are there, I would just let the nurses know.
I never did get a port. After my third treatment I'd considered it (the nurses were getting a little grumbly about finding veins) but in the end I didn't. It wasn't discussed with me until mid way through - my doctor said usually they are not needed with "younger patients" (there - I'm young again! *grin*).
Yes, please stay in touch as you go through your process. The only other thing I can think of at the moment is to pack a lovely blanket from home to have with you at the hospital. I didn't have it for my first treatment, but bought the twin sized version of the quilt on my bed at home. I loved having it there with me. It sounds unimportant, but really made a difference to me.
I understand how you are feeling. After the first round, and you know what to expect I think it will be easier - as easy as going to the hospital for 4 days of chemo can be - but that horrible anticipation will be over, and you will know what to expect (and you'll have one treatment down!) ***HUGS***
-Kat0 -
Happy to hear from you again Kat!Katrinka123 said:Happy to hear from you Glenda!
Am I young? Well, I was of "advanced maternal age" according to my OB when I had my son at 39, but apparently when diagnosed with uterine cancer at 46 I am considered "young" *grin*.
My younger son was really wonderful with all of the info I had to give him. He did so well, I was so very proud of him. I was very concerned about how he was going to feel about my hair. I had very curly hair that he loved to sit and twirl and play with while we'd sit and read or watch tv or snuggle.
Neither son (I also have a teen) said anything to me my first morning after it started to happen (I put a scarf on my head to keep my hair from shedding everywhere!) After he returned home from school he put his little and on my hand and said he was sorry about my hair, that he thought it must be very hard. I said yes, it was - and then we played UNO.
At bedtime I thanked him for his nice words to me after school, that they really helped. He said - Mom, it's only hair and it will grow back. What matters is what is on the inside, and that's still the same. He was 7 1/2 at the time. I think you will be very pleasantly surprised by how your grandson reacts to you.
I think all things considered, I did really well. The sleeplessness was really what kept me from getting back to normal right away, not nausea. About day 10 or 12 when my counts were lowest I was really tired - and then like magic I woke up the next day with so much energy! I'd arrive home from the hospital on Saturday and on Sunday I was doing little things around the house - I actually told my husband not to do the laundry while I was in the hospital because it was a good and "normal" task and it felt good to do it. My girlfriends did bring meals from Saturday night until Wednesday night. I wasn't too ill to cook from Sunday on - I was mostly pretty scatterbrained.
I didn't bring any suppliments with me to the hospital, or take anything other than my usual multivitamin and calcium (tho not while I was in the hospital). I don't see why it would be a problem taking them while you are there, I would just let the nurses know.
I never did get a port. After my third treatment I'd considered it (the nurses were getting a little grumbly about finding veins) but in the end I didn't. It wasn't discussed with me until mid way through - my doctor said usually they are not needed with "younger patients" (there - I'm young again! *grin*).
Yes, please stay in touch as you go through your process. The only other thing I can think of at the moment is to pack a lovely blanket from home to have with you at the hospital. I didn't have it for my first treatment, but bought the twin sized version of the quilt on my bed at home. I loved having it there with me. It sounds unimportant, but really made a difference to me.
I understand how you are feeling. After the first round, and you know what to expect I think it will be easier - as easy as going to the hospital for 4 days of chemo can be - but that horrible anticipation will be over, and you will know what to expect (and you'll have one treatment down!) ***HUGS***
-Kat
Kat
Thanks so much for the time you spend with your replies. This is Glenda's husband again, Eric. Things have been hectic around here again! Some time away with visits, and friends and family over, sister moving in, etc. It has been hard for Glenda and I to sit down together at the computer so she could respond to you. It is late, but I realized that you had written six days ago! and I wanted to write and say thanks!
Our life seems to have changed so radically since Glenda's diagnosis in early May, that everything and most anything that we find out and that people share with us is a blessing.
We don't feel so alone, and are a little less ignorant of this vast and complex world of
"cancer medicine!
You are "young", Glenda is 65. But she is in excellent health, has always taken care of herself, and most people have always thought she was 10 years younger at least. Her young, loving personality has a lot to do with that too! Still, the anxiety, and the real desire not to have chemo and radiation has made this difficult. I know she thinks of this most of the time as a poison, which it is, yet cancer is a poison too! Were there any key attitude shifts that helped you psychologically?
Yes, when the first one is over, I'm sure that will make her and I much less afraid.
Having you give us your version has helped a lot too. We will try to take your advice on constipation, hydration, pacing oneself at home, watching out for major decisions(!) and, yes, bringing somethings that are comforting from home.
I hope Glenda will be able to write to you tomorrow. I was online, and just thought
I would like to write something for the both of us.
Bless you, and your family. It sounds like you have a wonderful and supportive family at that! Eric and Glenda0 -
Busy is good!wingsoflight said:Happy to hear from you again Kat!
Kat
Thanks so much for the time you spend with your replies. This is Glenda's husband again, Eric. Things have been hectic around here again! Some time away with visits, and friends and family over, sister moving in, etc. It has been hard for Glenda and I to sit down together at the computer so she could respond to you. It is late, but I realized that you had written six days ago! and I wanted to write and say thanks!
Our life seems to have changed so radically since Glenda's diagnosis in early May, that everything and most anything that we find out and that people share with us is a blessing.
We don't feel so alone, and are a little less ignorant of this vast and complex world of
"cancer medicine!
You are "young", Glenda is 65. But she is in excellent health, has always taken care of herself, and most people have always thought she was 10 years younger at least. Her young, loving personality has a lot to do with that too! Still, the anxiety, and the real desire not to have chemo and radiation has made this difficult. I know she thinks of this most of the time as a poison, which it is, yet cancer is a poison too! Were there any key attitude shifts that helped you psychologically?
Yes, when the first one is over, I'm sure that will make her and I much less afraid.
Having you give us your version has helped a lot too. We will try to take your advice on constipation, hydration, pacing oneself at home, watching out for major decisions(!) and, yes, bringing somethings that are comforting from home.
I hope Glenda will be able to write to you tomorrow. I was online, and just thought
I would like to write something for the both of us.
Bless you, and your family. It sounds like you have a wonderful and supportive family at that! Eric and Glenda
I found being busy helped so much - even now when I can tend to dwell on the "what if's?" way too much!
Also great that Glenda is in good health otherwise. My doctors used to say to that I was doing well and very healthy - and I'd chuckle and say "yeah, except for that little cancer thing!"
I wish I had something profound to share that helped during treatment. I think one day at a time is my best advise (especially for the 4 day hospital stay for chemo!) When I'd look at the long picture at the front end of the treatment it seemed too long and impossible to do, but when I stayed in the moment and counted small hurdles it was easier.
Even tho the chemo comes with some scary possible side effects, I only viewed it as something toxic to any hidden cells that might be in my body - only a help to me and not something to harm me. When my hair fell out (both times!) I'd tell myself that the chemo was working and killing all fast growing cells.
Continue to stay busy!
-Kat0 -
Ifosfamide website with very complete info about side effectswingsoflight said:Message for Kat
Dear Kat
I am sorry this reply is so late. Things have been busy, but I also have to wait for my husband, because I have not learned how to get all this computer stuff figured out by myself yet. THANK YOU again for your response, for sharing your story and for being so helpful. You must be very young. Having a 7 yr. old to love is enough to make you well and also cause great concern.
I agree about not wanting to hear all the scary stories. I believe in positive thinking, visualization and a holistic approach. I know I must also have the chemo and radiation, which is the most challenging thing to think about after you have had the cancer diagnosis. It has been helpful to hear from someone who has been through this regime. Now I will prepare to lose my long hair, prepare snacks for the hospital for constipation. It was helpful to know to expect that.
How was your energy during treatment and the weeks afterward: Were you able to take supplements (vitamins, protein powders) into the hospital? I am doing some strong supplements to boost my immune system. I delayed the chemo for a month because of the alternative things I am doing and I wanted to feel stronger after the total hysterectomy.
We had just moved back from Florida when I was diagnosed, looking for a place to live and starting jobs. Obviously I couldn't start mine, because I am a kindergarten teacher. Now I must wait. I have a 5 year old grandson that I have been very close to. I took care of him for 4 1/2 yrs. I am concerned for him to see me go through the changes because Grammy has always been the one who could do everything. How has your son adjusted to your treatments? My close friends live in another city 1 hour away, but thankfully my sister is coming to live with us, (which was planned before anyway). We are very close, she is a breast cancer survivor of 10 years. She did not have chemo, just radiation.
Right now, I think I will have radiation after chemo. Did you have to keep your chemo port in when you stopped your cycle of treatments? I will have my port put in Aug. 4th and start treatments a few days later.
I really appreciate all that you have shared with us, and if there is anything else that you recall from your treatment and would like to share with me, that would be great. I would like to stay in touch with you if that is OK. There is a great book by Dr. Andrew Weil called, "Treating Cancer: Integrative Medicine" I have a lot of faith in his healing holistic approach to medical practice.
You certainly are not vain for feeling so sad about losing your hair. For women it is a symbol of so many things, especially in this country.
Take care, and all blessings, Glenda
P.S. Yes I am still very anxious, depressed, and angry. I will be glad when treatment is complete!
http://www.drugs.com/sfx/ifosfamide-side-effects.html
I looked and this site should answer most of your questions and explains why the need for all the water.
Hope this helps you. Try not to panic. I absolutely agree with Kat and her sound advice to do your best and focus on one thing at a time. Look for and ask about what you can do to help yourself along with your doctors. Really, really sorry about what's happening right now with the cancer diagnosis. There is some absolutely great information being provided on this site. Don't forget that Google can be a very good source for the latest information.
I just copied and pasted "ifosfamide side effects" right out of your question to find that site and a number of other sites. There are some very important side effects that you might want to take a look at and discuss with your doctor, just so you're better prepared.
But for personal experience, there is no place better than here.
As always, love and hope to us all,
Claudia0 -
profile piccalifornia_artist said:Ifosfamide website with very complete info about side effects
http://www.drugs.com/sfx/ifosfamide-side-effects.html
I looked and this site should answer most of your questions and explains why the need for all the water.
Hope this helps you. Try not to panic. I absolutely agree with Kat and her sound advice to do your best and focus on one thing at a time. Look for and ask about what you can do to help yourself along with your doctors. Really, really sorry about what's happening right now with the cancer diagnosis. There is some absolutely great information being provided on this site. Don't forget that Google can be a very good source for the latest information.
I just copied and pasted "ifosfamide side effects" right out of your question to find that site and a number of other sites. There are some very important side effects that you might want to take a look at and discuss with your doctor, just so you're better prepared.
But for personal experience, there is no place better than here.
As always, love and hope to us all,
Claudia
Claudia,
i love the new profile pic!0 -
Deanna and Patricia's kind words
Thank you both so very much. There is a lot of thought that goes into my artwork. I try to make things relate to life's experiences. Not just mine, but what I have observed over my life. I have had people tell me that some of my paintings made them feel happy and that's why I had offered a free 5x7's to anyone on this site who emailed me with their request, there was no interest for months. Unfortunately, recent financial deficits (he,he) have made that free offer no longer an option. Should I find my financial feet again, I will make the offer once more. Earlier this week, Mary Ann called to mention she wanted to take me up on that offer and I was happy to oblige her. Kinda makes you wonder if you might perhaps totally suck (ah, can you say suck on this site?) when no one is interested in your paintings even when they're free. So her request made me very happy, and I did happen to have a print of the painting she requested.
Hope we all make it through this with love in our hearts and kind thoughts to all.
Patricia, I really think you should post some of the comments you sent re your doctors appointment. I haven't laughed so hard for a very long time. You are quite the little pistol given the right ammo.
Deanna, I am soooooooo relieved that your results were fantastic. I was sorta holding my breath til I heard.
I think I am going to have a wonderful day. Thanks to you both. : ~ )
As always, love and hope to us all,
Claudia0
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