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• March 16, 2013 9:20 a.m.

  I have read that tetracycline is being used to treat Multiple Muyeloma. My doctor said he would not give it to me because it has not been approved by the FDA. Does Mayo clinic use this drug for myeloma

  - Alice

• March 15, 2013 8:33 p.m.

  About those taking Xeloda. I took eight cycles of IV Folfox and a ninth cycle of just FU-5/Leucovorin (equal to Xeloda without OXaliplatin). With the Folfox cocktail I also received Emend and Aloxi (poweful and effective anti-emetics as well as a dose of a steroid. On my ninth cycle without the Oxaliplatin, my oncologist deleted the steroid and whoa, I developed a whopper case of hand foot sydrome with one cycle of FU-5 without the steroid. So, here's the question--do any of you with hand-foot syndrome taking Xeloda receive or ever ask for a steroid to perhaps fend off this horrible hand foot syndrome? It seemed so obvious to me, that FU-5 or Xeloda without a steroid would result in (for me) intolerable hand foot. MY oncologist has suggested I continue with Xeloda and not IV infusions of FU-5. Has steroids ever helped you all suffering hand foot from Xeloda?

  - Margaret

• March 8, 2013 2:02 p.m.

  I was taking sutent I was having side effects,my docter put me on votrient and I am doing good.Is there anyone out there is on votrient and how are you doing?

  - shirley

• February 28, 2013 10:47 a.m.

  I had colon cancer 3 yrs ago and took Xeloda. I had red feet and hands. Dr stopped one of the two pills when my toenails came off. I haved no fingernail trouble but I only have 2 toenails that grow.

  - Bob

• December 13, 2012 6:21 p.m.

  A year ago I was shocked to learn that the mastectomy I'd had in 1992 had metasticized to my bones. My back hurt but I thought nothing of it & was not warned by my doctor. It's so helpful to read of others' experiences with Zeloda. I am on my second round, 2 wks on & one wk off. I was afraid of it because of the long list of side effects. So far so good! I am happy to say I have not had any side effects, except for fatigue which I had more strongly with "Ixempra" which I understand is a newer drug, using a porta cath. I recommend a porta-cath which makes it easier to take. My oncologist changed me to Zeloda because Ixempra had stopped working. Instructions that came with my prescription said to take Zeloda within a half hour of eating. I do keep it separate from my other meds. I haven't lost my hair, but had it shaved off in Feb. in anticipation of it falling out but it didn't! It came in thick & curly. but now that it's longer the curl has almost all been cut off. Good luck to us all! aAvr63

  - Adrienne

• November 24, 2012 2:11 p.m.

  I have Ph+ CML (Chronic Myeloid Leukemia) and have been treated with Tasign chemo pills for 22 months. I have been very receptive to the medication and have been in remission for 17 months. The chemo pills are powerful and cause heavy fatigue. At first I was told that I would have to take Tasigna forever, now my oncologist has said that if the deep remission continues I may someday be able to stop the pills. I look good, so people expect me to perform as usual, something I absolutely cannot do. I feel too tired to breathe. Ritalin has been added, but that makes me jittery and I take it only when I absolutely need it for busy days.

  - Fran

• November 15, 2012 9:24 a.m.

  To answer a few questions from comments. Kay - targeted therapy such as Sutent and Afinitor are a form of oral chemotherapy. For those of you dealing with cost issues related to coverage of oral chemotherapy - refer to our previous blog discussion from July, 2012 that discusses this in detail. Resources are mentioned here as well - New cancer treatments create cost challenges at - http://www.mayoclinic.com/health/how-to-pay-for-cancer-treatment/MY02153

  - Sheryl Ness

• November 13, 2012 8:14 a.m.

  I have been taken an oral chemo drug for three years and notice some side effects. I have very dry mouth, despite drinking water all day, and I have neuropathy in my feet and ankles, gradually creeping up my legs. Also my white counts and platelets have dropped significantly and it is harder to recover from colds and things like that. Bladder infections more frequent too. A friend on the same drug has lost all sense of taste and smell. Also, I have developed allergies to certain foods, including soy (and that's in nearly all bought goods) and now I have become lactose intolerant. On the good side, my red blood count is stable and my oncologist looks at that figure and tells me to put up with the side effects. At least I am able to function, and I am very careful about where I put my feet and what I eat now. It has given me three good years I might not have had otherwise.

  - Rosemary

• November 10, 2012 2:35 p.m.

  How interesting this article's replies have been. Just another reminder thaat although we can support each and tell our success stories as well as side effects it also tells us that each patient with cancer is a unique case, responsing to medicines in different ways. I tend to like the success stories,,, of course, but at the same time it is good for me to her some of the side effects others re having. It allows me to not feel like I am complaining when I report any to the doctor as I know others are experiencing the same thing. I was told my last visit that there are two new oral pills out that she can use if the xeloda stops working. Isn''t research wonderful.

  - Anna

• November 9, 2012 7:11 p.m.

  I started Xeloda in July 2012. One week on, one week off. I started in 2006 with Metastatic Breast Cancer which spread to my bones, then in my liver. My Dads Cardiologist in Iowa, where I don't live, told me Xeloda is a wonderful oral chemo drug when it works. I'm fortunate, it's working! My feet are starting to peel & burn some, fingernails are dry & splitting. I keep them polished, but the tips of fingers are sensitive. I have had a little nausea, but rare. I take Lorazepam 5mg at night for restlessness/nausea. Zofran gave me a headache. Tamoxifen is a Hormonal Treatment for Breast Cancer, not chemotherapy. I'm doing & feeling great. Liver Tumors are shrinking.

  - Beverly

• November 9, 2012 9:04 a.m.

  I have been on Xeloda for ten months both in conjunction with Chemo IV and now as a maintenance plan. One week on, one week off. Have overcome nearly all side effects except Hand/Foot Syndrome, but it is manageable. Dr says I may be on from here on out. Seems to be working for me with remission. Good luck to all.

  - Wayne

• November 9, 2012 8:15 a.m.

  I did not know oral chemo existed. I'm taking a copy with me when I see my doctor. Thanks so much for writing this article.

  - denna

• November 8, 2012 11:57 p.m.

  At 85 years of age and after a diagnosis of Stage 1 breast cancer and having a radical mascetomy, I was prescribed Tamoxifen 10MG tablets - take 1 tablet by mouth twice a day. I am assuming that this is considered oral chemotherapy. I had not been told not to mix it in with other medicines in a medicine box, so appreciate the information. Also, after taking it for six months I am now in conversation with my doctor as to whether to continue it. Any comments?

  - Terry

• November 8, 2012 2:36 p.m.

  I took Revlimid capsules for about 4 months; along with Dexamethasone. I became extremely agitated by the Dexmethasone...insomnia, nervous, etc. I did go into remission though and am happy with the outcome.

  - Diane

• November 8, 2012 2:29 p.m.

  I took Sutent for most of 2011. It was very difficult. From the first round, I had a sore, blistered tongue and mouth. I couldn't get relief and went to using a baby toothbrush and bubblegum flavored toothpaste. Mint flavors set me on fire. My hands were ok, but my feet were so bad that I could hardly walk. ONC said it was not hand-foot as it did not look like the pictures. By November, I could not walk and huge pieces of flesh was coming off my feet. He agreed to let me stay off 4 wks and see. Immediate improvement. I stopped Sutent. I'm doing fine and continue follow-ups.

  - Linda

• November 8, 2012 2:28 p.m.

  I started Afinitor Dec. 2011, 10mg for neuroendocrine carcinoid cancer in the lung that had metastasized to the liver and other areas. Initial treatment was "traditional" chemo with essentially no change (Aug. 2011 - Nov. 2011). I had no noticeable side effects until Feb. 2012. Began experiencing pneumonitis which is a known possible side effect from the drug. I stopped for two weeks and had almost immediate resolution. Started Afinitor again after 2 weeks but at 5 mg. PET scans initially showed reduced uptake but for last 2 scans (done every 3 months), disease is "stable". Afinitor (oral chemotherapy) for me, is allowing for a near normal life. I appreciate this gift. Best wishes to all!

  - Jayne

• November 8, 2012 1:31 p.m.

  I have just finished a cycle of over 850 Xeloda piils (in combination with 7 6-hour chemo infusion treatments) which covered an 8 month period. I think I was very fortunate - no nausea (I took Zofran, an anti-nausea drug at even a hint as advised by the very knowledgeable nurses at MassGeneral in Boston); no fatigue; no side effects whatsoever other than hair loss - for which I have glorious wigs!

  - Kay-Ellen

• November 8, 2012 1:30 p.m.

  There's a possible challenge with oral chemo. It's considered outpatient theapary. Some states allow insurance companies to not cover oral chemo with prescription plans. It falls between "insurance cracks". I'm working with our WI State Senator to get it changed. Some plans in our state will cover it if your doctor works with them.

  - Pat

• November 8, 2012 1:25 p.m.

  Can or is 'targeted chemotherapy' Pills taken like Sutent and Afinitor considered as the oral chemotherapy you spoke of? Also, my team after 12 cycles of Sutent and beginning the 3rd of Afinitor said "breathing is often due to laxity of the diaphram, diet loss and fatigue are normal, as are lower cbc levels--watch the WBC levels for immune protection.

  - Kay

• November 8, 2012 1:04 p.m.

  I started Xeloda 10 days ago. I have never felt so exhausted. Even walking I was short of breath. For 4 daysI had a feeling of pressure on my chest but now that has passed. My appetite has decreased. Today I feel a lot better and not so tired so maybe my body is just getting used to the drug. I take the pills with food not water and that way I can get them down. I notice now that the palms of my hands are looking redder and feel funny. I will put udder balm on them.

  - Vicki

• November 8, 2012 12:44 p.m.

  I have been taking xeloda for a year now. My PET scan this past week indicated "significant improvement" I must say it was difficulty adjusting to it. I have trouble swallowing pills but the pharmacist and doctor came up with an alternate way and although it is a little more difficult to get it down it is working. I do keep my xeloda separate from everything and even use throw away glasses and spoons. My first couple of months was quite rough with nausea and fatique but those are gone now. I have good skin on my hands and feet (you must keep them full of lotion) I use vaseline at night and a cream during the day. My blood work has remained good. One adjustment was made to make it more tolerable. My ONC. changed my cycle from on two weeks and off on to on for one week and off for one week so that means my cycle is a month instead of three weeks. It is much more tolerable. I say hooray for oral.

  - Anna