CancerCompass message board discussion started by Kathleen51 on 10/31/2005 http://www.cancercompass.com/message-board/message/all,3304,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello, I have received 4 doxil treatments so far. It seems to be the right drug for me as my CA 125 is decreasing. Last time I had a treatment (10-24)my gyn/oncologist doubled the dose. I developed that hand-foot syndrome, only of the hands, and also a rash over my entire body. It started 2 days after the treatment on the 26th. I am using all kinds of creams (but not steroids as is recommended). My local internist says he thinks I can't have a steroid shot, being on chemo. Does anyone have any knowledge or experience with this? Is there anything else that works besides calamine lotion, bag balm, aveeno baths, benadryl cream and pills? I have to call CTCA today because the rash seems to just stay the same and is not getting any better. It is very annoying and driving me crazy!!! Kathleen51 Mon, 31 Oct 2005 00:00:00 GMT Try Utterly Smooth cream. I also was given Doxil treatments at CTCA and it seems to work. May God be with you. Sincerely, Kathy Katwood1 Wed, 09 Nov 2005 00:00:00 GMT Try Utterly Smooth cream. I also was given Doxil treatments at CTCA and it seems to work. May God be with you. Sincerely, Kathy Katwood1 Wed, 09 Nov 2005 00:00:00 GMT Dear Kathy, Thanks ever so much for your recommendation. I am using mostly Bagbalm. Even after the steroid shot that I was allowed to have last Monday, the rash has gotten only somewhat better. I don't think that shot really worked, as I was given a shot of steroids for an allergic type reaction many years ago and my rash was completely gone the next day! I guess it's just what they call a "chemo rash" and will only go away in time. My next treatment will be on the 18th. If my CA 125 has gone down, it will really be worth it! Did you finish your treatments at CTCA? I hope you are doing very well now. After chemo, does the rash go totally away? Again, thanks so very much and many blessings to you! Warm regards, Kathleen Kathleen51 Wed, 09 Nov 2005 00:00:00 GMT I just finished up my last round of Doxil on 10-20-05. I will have ct scans on 11-30-05 to see what my next step will be. My Ca-125 came down to the normal range. I hope that you have great success. God Bless. Kathy Katwood1 Sat, 12 Nov 2005 00:00:00 GMT Hi Kathy, So good to hear that your CA 125 has come down!!! Many, many congratulations and may your scans all come out clean as well!!!! I'll think of you on that day. How many Doxil treatments did you end up having? Many blessings on your healing journey! Kathleen Kathleen51 Sat, 12 Nov 2005 00:00:00 GMT I've been getting Doxil infusions (18mg per swuare meter) for my brain cancer treatment every other Tuesday for almost a year. I had the dry skin rash where my bra rubbed against my body. I had to use a cream that dried the skin out more and then after that dried apply a moisturizer. I don't know why you wouldn't be able to have a steroid shot. I've been given the steroid decadron as a premedication with my chemo. I've also been given perdisone to help with an ear infection I had. The hand-foot stuff is a pain. For my feet I soak them good then coat them with a ton of Vasaline. Then I wrap my feet in plastic food wrap to keep the moisture in. I put socks on over the wrap and leave it like that for at least 30 minutes. It makes my feet nice and soft. It helps with the hands for a little while too. For everyday use I use Curel fragrance free lotion. Brainy_chick Sun, 20 Nov 2005 00:00:00 GMT Hi Pati! Well, after the 4th treatment, I did finally get the steroid shot (Solu-Medrol). It didn't really help that much. On my last visit of 11-18-05 they decided to give me decadron, which they said they thought I had always been given (Not true). They gave me some pills to take at home for weaning. I can say that the Decadron has really helped and am so glad that they finally got with it and gave it to me. I guess they wait until you really have some fairly bad reactions as we know, steriods have their problems too. I know the stomach lining gets further irritated and also I became very emotional, but also had more energy, got up earlier and actually felt more "normal" I live in Arizona and I'm used to applying lotion about 10 times a day under normal circumstances. I like the idea of the foot wrap--think I'll try that one. I also switched to A&D ointment and Utterly Smooth, which I like better than the Bag Balm. Thanks for your information and many blessings on your healing journey! Kathleen51 Kathleen51 Wed, 23 Nov 2005 00:00:00 GMT Kathleen, I'm very relieved to have read your comments on chemo rash problems. I have had three treatments and have been covered with rash as you have. It isn't an "everyday" type of rash, as you know so well. Like you I have dry skin and am accustomed to slathering myself with oils and creams. But this rash has brought me to my knees. My oncologist has talked about pulling me off of Doxil because it's so bad. I have sent him a link to the chat between you and other women as he thought the rash is quite rare. Can you tell me what doseage of decadron your oncologist prescribed and if it is working well enough that you have continued on Doxil? Any information will be most greatfully appreciated! Vanilla Queen Thu, 12 Jan 2006 00:00:00 GMT Dear Vanilla Queen, Do you go to the CTCA? Dr. Williams is my Dr. there. They started giving me decadron I.V. prior to the Doxil on my 4th treatment--sorry, I don't know the exact dosage, I will find out next week. Yes, the rash is quite common, as a matter of fact it is discussed in the booklet that the drug company has made up about it. They call it PPE or Plantar(feet)/Palmar(hands) erythmatosis. I am very surprised that your MD does not know this. After 6 Treatments of Doxil, there is still some cancer left in my abdomen. I need maybe 2 or 3 more treatments. The "rash" (I use quotes because in some places it looks like a radiation burn!) started to be very problematical after my 3rd treatment. On the 4th, they gave me the Decadron IV which did help the rash, but it didn't take it away completely. Then other problems occurred--the Decadron wreaked havoc on my stomach and esophagus, so now I have esophageal erosions. I have to take Protonix and Zantac as long as I'm getting the Decadron. Even with all this, its still better than having the cancer or going on taxol (at least I have my hair and my CBCs are always good, no weight loss, no extreme fatigue, no retching my guts out.) People look at me and say I don't look like I have cancer (whatever that means!) Doxil is working for me. I had a PET/CT scan and showed the cancer spots were greatly reduced. I have learned many things. Most docs gauge their manner of treatment by a CA-125 test, which at best is highly unreliable. When I had a grapefruit-sized tumor in my ovary, my CA-125 was 6. It now hovers around 200. The plain old CT scans that they did on me post-op and pre-Doxil treatment were all "normal", that is no cancer (obviously wrong). A plain CT scan shows growths that are at least 1 centimeter. The PET/CT shows up growths that are 1 millimeter, or 100 times smaller. It is state-of-the-art test and some insurance companies won't cover it, but it is the most reliable of all the tests, short of a surgical biopsy. I went to a seminar on the PET/CT and it was taught by a very knowledgeable radiology MD--very refreshing for this area! Back to the rash. I am still very careful. The red "glow" has gone away. I still use the DMSO cream (which I finally decided was the best thing) alternating with Lidex, a steroid cream and top it all off with Udderly Smooth. For the really rough, DRY spots, I use A & D ointment (you can get these both at Walgreens for $1.99) The DMSO is from the CTCA and it has to be refrigerated. I can now bring this home on the plane because it's cold enough outside. I live in AZ, which is a long ride from Chicago. I also wear the little white gloves most of the time. My hands are the worst, still turning that very deep red color for about 4-10 days after the Doxil treatment. It is now almost 4 weeks away since my last treatment. My doc put my next appointment out for 5 weeks on the 20th because she thinks I'm doing that much better. My husband has been just great about all this usually does the dishes and cooking. Getting your hands wet makes them worse, as you must know. You can use latex gloves for this but if you leave them on too long, they can be a problem. All things considered, Doxil is no where near as bad as some of the other chemos and definitely better than having the cancer! I watched my neice and sister die of cancer and they were both on a Platinum + other chemos, one had lung cancer (did not smoke) and the other had a very aggressive type of ovarian cancer (she was on taxol too.) Well, I hope that helps. I had a bout of insomnia tonight and there was your message! Must have been divinely inspired. If you have any other questions, please ask away! Many blessings to you, Kathleen PS: The drug co. is Ortho Biotech, website www.Doxil.com, or call 1-800-553-3851. And the CTCA is wonderful!!!!!!!!!!!!! Blessings again! Sedonalady Fri, 13 Jan 2006 00:00:00 GMT Thank you for your lengthy response. I have just started to have hand and foot syndrome, so far, just my heels + tingling. The rash I have covers most of my body. I did an online search last night and found that the rash is probably an allergy response, the story of my life, unfortunately. I have found tamanu oil has helped a lot with the flat "radiation burn" part, and I've kept my skin as moist as possible. My doctor actually knows a lot about Doxil responses and is very familiar with hand/foot syndrome (which I refer to as "hoof and mouth") but he had never seen anyone covered neck to toes with chemo rash from Doxil. His thoughts are to put me on Avastin and Taxol; my concern about hair loss is that I do speaking engagements at big events though I could become a brunette again with a fabulous little wig. Having chemo weekly is also an issue as I travel a lot. I am dealing with advanced breast cancer rather than ovarian cancer. I had a tiny lesion in one breast, one sentinel node and then the cancer went to my liver and lungs. I was diagnosed two years ago with Stage IV and have had no surgery other than the one lymph node. I was put on an aromatase inhibitor (blocks estrogen) and it worked well for a while. This is my first experience with chemo. I'm impressed how you women know all sorts of information about markers and tumor response. I run a business and have remained incredibly busy up until now, in part because I was determined that cancer wouldn't interfere with my daily life. I am now being humbled into understanding that I need to make some shifts in personal perception and to slow down a bit. I'm also faced with the challenge of being a single woman without a partner and money is certainly a major issue. When you have time, please tell me what CTCA is. I'm in Santa Cruz California. Thank you again for your response. I hope that you are able to knock the cancer into forever remission! Vanilla Queen Fri, 13 Jan 2006 00:00:00 GMT Hello again, My oncologist said once that she didn't know why its called "PPE" because it can go all over the body as it did with me. I had rashes and blisters. When I had my internist looked at it he said this is definitely a "chemo rash" (I assumed there must be other chemos that cause this to occur) and there was no way to treat this other than steroids, preferably at the time of treatment and IV. He is the director of hospice and handles/sees many cancer patients. ~as soon as I got the IV steroids, the "rash" and blisters went away. I still have PPE.~~ CTCA stands for Cancer Treatment Centers of America is the largest sponsor of this website. Their "official" website is www.cancercenter.com. They have hospitals in Seattle, Tulsa, Philly and Chicago. I go to Chicago because that is where the gyn/oncologist is. If I had breast cancer, I would go to an oncologist who is a specialist in Breast Cancer. I would not settle for less. It sounds like you have a lot of faith in your MD which is great, BUT it is always a good idea to get another opinion especially in these life threatening situations. The CTCA sees thousands of people who have cancer every day--they have a ton of experience. They use state-of-the-art technology and mind-body, integrative medicine. Everything is researched, including the supplements. They do not use experimental treatments. Enough said, Kathleen Sedonalady Fri, 13 Jan 2006 00:00:00 GMT I'm so appreciative of your support and sharing your experiences. My oncologist is a reasearch scientist with a strong integrative medicine approach. If he weren't, it wouldn't have been a match for me. I cut and pasted the most pertinent information you shared with me and sent it to him. I'm willing to "tough it out" and stay on the Doxil as I don't want to endure weekly treatments until I must. I'm currently on Prednisone again and while the rash is still there, the fire and heat is not. Thank you again for you helpful information. Oh, I found Tamanu oil has helped a lot with the dryness and pain of the "radiation-like" rash. It's dreadfully pricey, however. I'm going to write to the company to find out if they sell wholesale or are willing to extend a discount to cancer patients. I was in Sedona last December during the floods so I wasn't able to go to Oak Creek Canyon or up to the red rocks. I plan to come back. I would enjoy remaining in touch offline so that we don't stray too far from the point of the message board. I can be reached at rain@vanilla.com. Vanilla Queen Sun, 15 Jan 2006 00:00:00 GMT After 6 months how are you doing with doxil? I had my first treatment of doxil 3 wks ago. Last week a blister appeared on the back of my hand similar to poison ivy although I had not been in the woods. Every few days another blister breaks out and I have a rash(no blisters)on my face! Is this like what you experienced? Ritas Sun, 25 Jun 2006 00:00:00 GMT Hello, I have been off Doxil for about 4 months. I think I had a total of 9 treatments. My CA-125 see-sawed, that is it went up and down but always around 200. Now, I am Carboplatin, the rash, blisters, red radiation "glow"--everything has entirely disappeared. So, that is good to know, that it does go away after you get off treatement. Yes, I recall having blister-like lesions, but not on my head and not one at a time. I would have a whole slew of them, on my upper abdomen and also elbows? I would get them wherever I was leaning on something. I used to get them where my pajama seems were while I was sleeping. But then, the blisters went away after 5 or so treatments. It seemed to manifest with the blisters during the earlier part of the treatment. I only had the rash and redness on my hands and feet and I don't recall any blisters during the latter part. I hope this helped you. I am so glad to be rid of that rash. The IV Decadron definitely helped. They gave this to me prior to the treatment. Also, the DMSO cream and Vitamin E cream were the best creams IMO. Blessings, Kathleen Sedonalady Wed, 28 Jun 2006 00:00:00 GMT Dear Kathleen:I am also dealing with ovarian cancer. I have had 8 treatments of Doxil, and I was doing fairly well in every possible sense. The only side effects were my hands and feet being red but I don't complain too much.Recently, my doctors decided to run some test. I had a PET/SCAN and the CA 125. Both came back good, except that there is something in my colon, and they want to rule out colon cancer. I had a colonoscopy done less than one year ago, and I was perfectly well. So, I am hoping that this was just an inflamation of my colon, and what they call "a false positive"My question to you, since your email goes back to 1/13/06, is how are you doing today and how many treatments of Doxil did you have. I am desperate to corresponce with other women that undergoing the same treatment. I live in New Jersey and I don't know anybody who is undergoing the same treatment. Hope you will answer soon,ChalitaOn 1/13/2006 Sedonalady wrote:Dear Vanilla Queen, Do you go to the CTCA? Dr. Williams is my Dr. there. They started giving me decadron I.V. prior to the Doxil on my 4th treatment--sorry, I don't know the exact dosage, I will find out next week. Yes, the rash is quite common, as a matter of fact it is discussed in the booklet that the drug company has made up about it. They call it PPE or Plantar(feet)/Palmar(hands) erythmatosis. I am very surprised that your MD does not know this. After 6 Treatments of Doxil, there is still some cancer left in my abdomen. I need maybe 2 or 3 more treatments. The "rash" (I use quotes because in some places it looks like a radiation burn!) started to be very problematical after my 3rd treatment. On the 4th, they gave me the Decadron IV which did help the rash, but it didn't take it away completely. Then other problems occurred--the Decadron wreaked havoc on my stomach and esophagus, so now I have esophageal erosions. I have to take Protonix and Zantac as long as I'm getting the Decadron. Even with all this, its still better than having the cancer or going on taxol (at least I have my hair and my CBCs are always good, no weight loss, no extreme fatigue, no retching my guts out.) People look at me and say I don't look like I have cancer (whatever that means!) Doxil is working for me. I had a PET/CT scan and showed the cancer spots were greatly reduced. I have learned many things. Most docs gauge their manner of treatment by a CA-125 test, which at best is highly unreliable. When I had a grapefruit-sized tumor in my ovary, my CA-125 was 6. It now hovers around 200. The plain old CT scans that they did on me post-op and pre-Doxil treatment were all "normal", that is no cancer (obviously wrong). A plain CT scan shows growths that are at least 1 centimeter. The PET/CT shows up growths that are 1 millimeter, or 100 times smaller. It is state-of-the-art test and some insurance companies won't cover it, but it is the most reliable of all the tests, short of a surgical biopsy. I went to a seminar on the PET/CT and it was taught by a very knowledgeable radiology MD--very refreshing for this area! Back to the rash. I am still very careful. The red "glow" has gone away. I still use the DMSO cream (which I finally decided was the best thing) alternating with Lidex, a steroid cream and top it all off with Udderly Smooth. For the really rough, DRY spots, I use A & D ointment (you can get these both at Walgreens for $1.99) The DMSO is from the CTCA and it has to be refrigerated. I can now bring this home on the plane because it's cold enough outside. I live in AZ, which is a long ride from Chicago. I also wear the little white gloves most of the time. My hands are the worst, still turning that very deep red color for about 4-10 days after the Doxil treatment. It is now almost 4 weeks away since my last treatment. My doc put my next appointment out for 5 weeks on the 20th because she thinks I'm doing that much better. My husband has been just great about all this usually does the dishes and cooking. Getting your hands wet makes them worse, as you must know. You can use latex gloves for this but if you leave them on too long, they can be a problem. All things considered, Doxil is no where near as bad as some of the other chemos and definitely better than having the cancer! I watched my neice and sister die of cancer and they were both on a Platinum + other chemos, one had lung cancer (did not smoke) and the other had a very aggressive type of ovarian cancer (she was on taxol too.) Well, I hope that helps. I had a bout of insomnia tonight and there was your message! Must have been divinely inspired. If you have any other questions, please ask away! Many blessings to you, Kathleen PS: The drug co. is Ortho Biotech, website www.Doxil.com, or call 1-800-553-3851. And the CTCA is wonderful!!!!!!!!!!!!! Blessings again!  Chalita Sun, 11 Mar 2007 00:00:00 GMT Hi, I just read your post and am wondering how you are doing.  I am having my 2nd round of doxil tomorrow.  I am being treated as an ovarian cancer patient although I have fallopian tube cancer.  I have been through carbo/taxol and radiation.How do the colon thing work out?  Did that show up in you CT/PET abdominal, pelvic scan.  The last colonoscopy I had was 5 1/2 years ago when they were trying to find out what was wrong with me.  I have scans now every 3 months so I was hoping that the scan shows the colon. I hope you are well and would love to be able to correspond with someone with the same kind of cancer and treatments.Good luck,Judy Turtlebugs3 Tue, 10 Apr 2007 00:00:00 GMT  On 4/10/2007 Turtlebugs3 wrote:Hi, I just read your post and am wondering how you are doing.  I am having my 2nd round of doxil tomorrow.  I am being treated as an ovarian cancer patient although I have fallopian tube cancer.  I have been through carbo/taxol and radiation.How do the colon thing work out?  Did that show up in you CT/PET abdominal, pelvic scan.  The last colonoscopy I had was 5 1/2 years ago when they were trying to find out what was wrong with me.  I have scans now every 3 months so I was hoping that the scan shows the colon. I hope you are well and would love to be able to correspond with someone with the same kind of cancer and treatments.Good luck,JudyHi Judy:After the PET/SCAN casting some doubts on my colon, my doctors sent me for a CATSCAN of my pelvis and abdomen (with contrast) and this test showed nothing in my colon but a lesion in my liver (8 mm).Back in May 2006, my cancer came back showing metastatic activity in my pelvis and in my liver. After 8 treatments with Doxil, the doctor wanted to run some tests. It shows that my abdomen and pelvis is clear except for the lesion on my liver. I did very well with Doxil. I did not experience any major side effects except for the redness in hands and feet. I strongly recommed that you follow the recommendation given by the Doxil website. It is very important that you do nothing with your hands 5 days after treatment. do not eat or drink anything hot, or take hot showers. Do not expose yourself to high temperatures and stay away from the sun completely.Hope you do well. Keep in touch.Alicia Chalita Thu, 12 Apr 2007 00:00:00 GMT  On 1/13/2006 Sedonalady wrote:Dear Vanilla Queen, Do you go to the CTCA? Dr. Williams is my Dr. there. They started giving me decadron I.V. prior to the Doxil on my 4th treatment--sorry, I don't know the exact dosage, I will find out next week. Yes, the rash is quite common, as a matter of fact it is discussed in the booklet that the drug company has made up about it. They call it PPE or Plantar(feet)/Palmar(hands) erythmatosis. I am very surprised that your MD does not know this. After 6 Treatments of Doxil, there is still some cancer left in my abdomen. I need maybe 2 or 3 more treatments. The "rash" (I use quotes because in some places it looks like a radiation burn!) started to be very problematical after my 3rd treatment. On the 4th, they gave me the Decadron IV which did help the rash, but it didn't take it away completely. Then other problems occurred--the Decadron wreaked havoc on my stomach and esophagus, so now I have esophageal erosions. I have to take Protonix and Zantac as long as I'm getting the Decadron. Even with all this, its still better than having the cancer or going on taxol (at least I have my hair and my CBCs are always good, no weight loss, no extreme fatigue, no retching my guts out.) People look at me and say I don't look like I have cancer (whatever that means!) Doxil is working for me. I had a PET/CT scan and showed the cancer spots were greatly reduced. I have learned many things. Most docs gauge their manner of treatment by a CA-125 test, which at best is highly unreliable. When I had a grapefruit-sized tumor in my ovary, my CA-125 was 6. It now hovers around 200. The plain old CT scans that they did on me post-op and pre-Doxil treatment were all "normal", that is no cancer (obviously wrong). A plain CT scan shows growths that are at least 1 centimeter. The PET/CT shows up growths that are 1 millimeter, or 100 times smaller. It is state-of-the-art test and some insurance companies won't cover it, but it is the most reliable of all the tests, short of a surgical biopsy. I went to a seminar on the PET/CT and it was taught by a very knowledgeable radiology MD--very refreshing for this area! Back to the rash. I am still very careful. The red "glow" has gone away. I still use the DMSO cream (which I finally decided was the best thing) alternating with Lidex, a steroid cream and top it all off with Udderly Smooth. For the really rough, DRY spots, I use A & D ointment (you can get these both at Walgreens for $1.99) The DMSO is from the CTCA and it has to be refrigerated. I can now bring this home on the plane because it's cold enough outside. I live in AZ, which is a long ride from Chicago. I also wear the little white gloves most of the time. My hands are the worst, still turning that very deep red color for about 4-10 days after the Doxil treatment. It is now almost 4 weeks away since my last treatment. My doc put my next appointment out for 5 weeks on the 20th because she thinks I'm doing that much better. My husband has been just great about all this usually does the dishes and cooking. Getting your hands wet makes them worse, as you must know. You can use latex gloves for this but if you leave them on too long, they can be a problem. All things considered, Doxil is no where near as bad as some of the other chemos and definitely better than having the cancer! I watched my neice and sister die of cancer and they were both on a Platinum + other chemos, one had lung cancer (did not smoke) and the other had a very aggressive type of ovarian cancer (she was on taxol too.) Well, I hope that helps. I had a bout of insomnia tonight and there was your message! Must have been divinely inspired. If you have any other questions, please ask away! Many blessings to you, Kathleen PS: The drug co. is Ortho Biotech, website www.Doxil.com, or call 1-800-553-3851. And the CTCA is wonderful!!!!!!!!!!!!! Blessings again!Kathleen, I was so inspired reading your posting today.  I started Doxil 6 days ago and must say I have had some weird side effects since then.  Diagosed with Stage 3c Ovarian in 12/2005 and recurrence in 4/2007 I am platinum resistant.  I had the chemo resitance testing done and they said Doxil and Taxol would be good options for me.  Taxol is NOT a good choice for me because of the toxicity - it made me feel horrible the first time.  Anyway, back to Doxil - I have had discomfort in my chest - no hand or foot thing yet.  Did you experience discomfort or a weird feeling in your chest, and how long after you started Doxil did your hand foot issues begin? On an aside, I contemplated going to CTCA because I loved the fact that they treated this horrible disease from a holistic approach.  After much prayer, we decided to stay local, but I see a naturopath, have totally changed my diet and am working on the mind/emotion part of dealing with this.  I think it was the right decision for us but am so happy to know you were so pleased with CTCA.  I do believe we can win the battle with this disease if we give our bodies the right tools.I pray you are doing well.  In His Mercy,Karen kmwdesign Sun, 26 Aug 2007 00:00:00 GMT  On 8/26/2007 kmwdesign wrote: On 1/13/2006 Sedonalady wrote:Dear Vanilla Queen, Do you go to the CTCA? Dr. Williams is my Dr. there. They started giving me decadron I.V. prior to the Doxil on my 4th treatment--sorry, I don't know the exact dosage, I will find out next week. Yes, the rash is quite common, as a matter of fact it is discussed in the booklet that the drug company has made up about it. They call it PPE or Plantar(feet)/Palmar(hands) erythmatosis. I am very surprised that your MD does not know this. After 6 Treatments of Doxil, there is still some cancer left in my abdomen. I need maybe 2 or 3 more treatments. The "rash" (I use quotes because in some places it looks like a radiation burn!) started to be very problematical after my 3rd treatment. On the 4th, they gave me the Decadron IV which did help the rash, but it didn't take it away completely. Then other problems occurred--the Decadron wreaked havoc on my stomach and esophagus, so now I have esophageal erosions. I have to take Protonix and Zantac as long as I'm getting the Decadron. Even with all this, its still better than having the cancer or going on taxol (at least I have my hair and my CBCs are always good, no weight loss, no extreme fatigue, no retching my guts out.) People look at me and say I don't look like I have cancer (whatever that means!) Doxil is working for me. I had a PET/CT scan and showed the cancer spots were greatly reduced. I have learned many things. Most docs gauge their manner of treatment by a CA-125 test, which at best is highly unreliable. When I had a grapefruit-sized tumor in my ovary, my CA-125 was 6. It now hovers around 200. The plain old CT scans that they did on me post-op and pre-Doxil treatment were all "normal", that is no cancer (obviously wrong). A plain CT scan shows growths that are at least 1 centimeter. The PET/CT shows up growths that are 1 millimeter, or 100 times smaller. It is state-of-the-art test and some insurance companies won't cover it, but it is the most reliable of all the tests, short of a surgical biopsy. I went to a seminar on the PET/CT and it was taught by a very knowledgeable radiology MD--very refreshing for this area! Back to the rash. I am still very careful. The red "glow" has gone away. I still use the DMSO cream (which I finally decided was the best thing) alternating with Lidex, a steroid cream and top it all off with Udderly Smooth. For the really rough, DRY spots, I use A & D ointment (you can get these both at Walgreens for $1.99) The DMSO is from the CTCA and it has to be refrigerated. I can now bring this home on the plane because it's cold enough outside. I live in AZ, which is a long ride from Chicago. I also wear the little white gloves most of the time. My hands are the worst, still turning that very deep red color for about 4-10 days after the Doxil treatment. It is now almost 4 weeks away since my last treatment. My doc put my next appointment out for 5 weeks on the 20th because she thinks I'm doing that much better. My husband has been just great about all this usually does the dishes and cooking. Getting your hands wet makes them worse, as you must know. You can use latex gloves for this but if you leave them on too long, they can be a problem. All things considered, Doxil is no where near as bad as some of the other chemos and definitely better than having the cancer! I watched my neice and sister die of cancer and they were both on a Platinum + other chemos, one had lung cancer (did not smoke) and the other had a very aggressive type of ovarian cancer (she was on taxol too.) Well, I hope that helps. I had a bout of insomnia tonight and there was your message! Must have been divinely inspired. If you have any other questions, please ask away! Many blessings to you, Kathleen PS: The drug co. is Ortho Biotech, website www.Doxil.com, or call 1-800-553-3851. And the CTCA is wonderful!!!!!!!!!!!!! Blessings again!Kathleen, I was so inspired reading your posting today.  I started Doxil 6 days ago and must say I have had some weird side effects since then.  Diagosed with Stage 3c Ovarian in 12/2005 and recurrence in 4/2007 I am platinum resistant.  I had the chemo resitance testing done and they said Doxil and Taxol would be good options for me.  Taxol is NOT a good choice for me because of the toxicity - it made me feel horrible the first time.  Anyway, back to Doxil - I have had discomfort in my chest - no hand or foot thing yet.  Did you experience discomfort or a weird feeling in your chest, and how long after you started Doxil did your hand foot issues begin? On an aside, I contemplated going to CTCA because I loved the fact that they treated this horrible disease from a holistic approach.  After much prayer, we decided to stay local, but I see a naturopath, have totally changed my diet and am working on the mind/emotion part of dealing with this.  I think it was the right decision for us but am so happy to know you were so pleased with CTCA.  I do believe we can win the battle with this disease if we give our bodies the right tools.I pray you are doing well.  In His Mercy,Karen Hello again,It almost seems like light years ago that I was on Doxil.  I think I started to get the PPE after about 4 courses of treatment.  It was quite bad.  But...one person said I COULD NOT get a shot of steroids for this.  Then one person said I COULD.  I remember that getting this shot helped a great deal.  (It really didn't make much sense that I couldn't get a shot of steroids when they gave them with every treatment as well as steroid pills post treatement)  Also, that DMSO cream that they gave me helped a lot.  I am resistant to Taxol, thank the Lord for that as I never wanted to be on that.   I was on Doxil for 10 treatments of one treatment a month.  It seemed to do nothing.  My CA 125s would just keep going up and down between 200 and 300.  I never had any discomfort in my chest, but they did keep a close watch on my Echo-cardiograms as its cousin, Doxirubicin caused cardiac issues in the past.  They only do this as a preventative type of thing, as I don't think Doxil itself has ever caused anyone cardiac problems.After awhile of being off chemo totally (since April of this year), my CA-125 is now almost 800 + my latest PET CT is not the greatest.  It shows some new areas of concern.  I am rather freaked out over all of this and am going to my gyn-oncologist in Phoenix next week.  I feel OK, but my tests say something else!!If you can get past that rash, the Doxil really didn't cause me any other problems at all.  I have since been on Carboplatin, Tarceva and Topotecan.  I had to quit all of these because of various reasons.I wish you the best and hope your course of Doxil does it for you!!Best wishes,Kathleen      Sedonalady Mon, 27 Aug 2007 00:00:00 GMT  On 8/27/2007 Sedonalady wrote: On 8/26/2007 kmwdesign wrote: On 1/13/2006 Sedonalady wrote:Dear Vanilla Queen, Do you go to the CTCA? Dr. Williams is my Dr. there. They started giving me decadron I.V. prior to the Doxil on my 4th treatment--sorry, I don't know the exact dosage, I will find out next week. Yes, the rash is quite common, as a matter of fact it is discussed in the booklet that the drug company has made up about it. They call it PPE or Plantar(feet)/Palmar(hands) erythmatosis. I am very surprised that your MD does not know this. After 6 Treatments of Doxil, there is still some cancer left in my abdomen. I need maybe 2 or 3 more treatments. The "rash" (I use quotes because in some places it looks like a radiation burn!) started to be very problematical after my 3rd treatment. On the 4th, they gave me the Decadron IV which did help the rash, but it didn't take it away completely. Then other problems occurred--the Decadron wreaked havoc on my stomach and esophagus, so now I have esophageal erosions. I have to take Protonix and Zantac as long as I'm getting the Decadron. Even with all this, its still better than having the cancer or going on taxol (at least I have my hair and my CBCs are always good, no weight loss, no extreme fatigue, no retching my guts out.) People look at me and say I don't look like I have cancer (whatever that means!) Doxil is working for me. I had a PET/CT scan and showed the cancer spots were greatly reduced. I have learned many things. Most docs gauge their manner of treatment by a CA-125 test, which at best is highly unreliable. When I had a grapefruit-sized tumor in my ovary, my CA-125 was 6. It now hovers around 200. The plain old CT scans that they did on me post-op and pre-Doxil treatment were all "normal", that is no cancer (obviously wrong). A plain CT scan shows growths that are at least 1 centimeter. The PET/CT shows up growths that are 1 millimeter, or 100 times smaller. It is state-of-the-art test and some insurance companies won't cover it, but it is the most reliable of all the tests, short of a surgical biopsy. I went to a seminar on the PET/CT and it was taught by a very knowledgeable radiology MD--very refreshing for this area! Back to the rash. I am still very careful. The red "glow" has gone away. I still use the DMSO cream (which I finally decided was the best thing) alternating with Lidex, a steroid cream and top it all off with Udderly Smooth. For the really rough, DRY spots, I use A & D ointment (you can get these both at Walgreens for $1.99) The DMSO is from the CTCA and it has to be refrigerated. I can now bring this home on the plane because it's cold enough outside. I live in AZ, which is a long ride from Chicago. I also wear the little white gloves most of the time. My hands are the worst, still turning that very deep red color for about 4-10 days after the Doxil treatment. It is now almost 4 weeks away since my last treatment. My doc put my next appointment out for 5 weeks on the 20th because she thinks I'm doing that much better. My husband has been just great about all this usually does the dishes and cooking. Getting your hands wet makes them worse, as you must know. You can use latex gloves for this but if you leave them on too long, they can be a problem. All things considered, Doxil is no where near as bad as some of the other chemos and definitely better than having the cancer! I watched my neice and sister die of cancer and they were both on a Platinum + other chemos, one had lung cancer (did not smoke) and the other had a very aggressive type of ovarian cancer (she was on taxol too.) Well, I hope that helps. I had a bout of insomnia tonight and there was your message! Must have been divinely inspired. If you have any other questions, please ask away! Many blessings to you, Kathleen PS: The drug co. is Ortho Biotech, website www.Doxil.com, or call 1-800-553-3851. And the CTCA is wonderful!!!!!!!!!!!!! Blessings again!Kathleen, I was so inspired reading your posting today.  I started Doxil 6 days ago and must say I have had some weird side effects since then.  Diagosed with Stage 3c Ovarian in 12/2005 and recurrence in 4/2007 I am platinum resistant.  I had the chemo resitance testing done and they said Doxil and Taxol would be good options for me.  Taxol is NOT a good choice for me because of the toxicity - it made me feel horrible the first time.  Anyway, back to Doxil - I have had discomfort in my chest - no hand or foot thing yet.  Did you experience discomfort or a weird feeling in your chest, and how long after you started Doxil did your hand foot issues begin? On an aside, I contemplated going to CTCA because I loved the fact that they treated this horrible disease from a holistic approach.  After much prayer, we decided to stay local, but I see a naturopath, have totally changed my diet and am working on the mind/emotion part of dealing with this.  I think it was the right decision for us but am so happy to know you were so pleased with CTCA.  I do believe we can win the battle with this disease if we give our bodies the right tools.I pray you are doing well.  In His Mercy,Karen Hello again,It almost seems like light years ago that I was on Doxil.  I think I started to get the PPE after about 4 courses of treatment.  It was quite bad.  But...one person said I COULD NOT get a shot of steroids for this.  Then one person said I COULD.  I remember that getting this shot helped a great deal.  (It really didn't make much sense that I couldn't get a shot of steroids when they gave them with every treatment as well as steroid pills post treatement)  Also, that DMSO cream that they gave me helped a lot.  I am resistant to Taxol, thank the Lord for that as I never wanted to be on that.   I was on Doxil for 10 treatments of one treatment a month.  It seemed to do nothing.  My CA 125s would just keep going up and down between 200 and 300.  I never had any discomfort in my chest, but they did keep a close watch on my Echo-cardiograms as its cousin, Doxirubicin caused cardiac issues in the past.  They only do this as a preventative type of thing, as I don't think Doxil itself has ever caused anyone cardiac problems.After awhile of being off chemo totally (since April of this year), my CA-125 is now almost 800 + my latest PET CT is not the greatest.  It shows some new areas of concern.  I am rather freaked out over all of this and am going to my gyn-oncologist in Phoenix next week.  I feel OK, but my tests say something else!!If you can get past that rash, the Doxil really didn't cause me any other problems at all.  I have since been on Carboplatin, Tarceva and Topotecan.  I had to quit all of these because of various reasons.I wish you the best and hope your course of Doxil does it for you!!Best wishes,Kathleen   Hi Kathleen, I realize that this is an old message (I think)but noticed that you mentioned that you had to quit Topotecan and other chemos for various reasons. Can I ask why? I have stage 4 ovarian cancer and did carbo and taxol for my 1st line of treatment. Had a reoccurance and did 5 rounds of Doxil that worked great until I was to do my 6th treatment. My CA125 shot up and was told it wasn't working anymore. I am to start Topotecan this Friday and wondered what side effects I'm likely to have. Doctor says that all of whom in their office that are on Topotecan don't have a problem with naseau and vomitting. That is my biggest concern because I have to be able to work. Can you tell me what your side effects were? I would greatly appreciate your feedback.   Nervous KristaJ   KristaJ Tue, 12 Feb 2008 00:00:00 GMT