Chemotherapy for Stage IV
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Dear Treso,
I am concerned. I'm no doctor, no other qualification, but have not heard of anyone in stage IV "stopping" or taking a long break from chemo. When I asked for December off last year, my onc said it was living dangerously. she says it is maintenance to keep the cancer dormant.
Any chance of second opinion?0 -
The onc's do give 'chemo' breaks...not sure what makes that determination but there have been quite a few stage iv gals on here that have been able to take fairly long chemo breaks. Scans are stepped up so if there should be any progression, they can get back on the chemo right away. I think a period of being stable or seeing regression or NED allows the chemo breaks.
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I see.
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Those of you on tykerb...did your Oncologist request a (MUGA) heart function test prior to taking it?
Diagnosed 7 years ago..mast. w reconstruction. Stable with arimidex for five years then recurred in bones. Stable on faslodex for 18 months now in spine and adrenal gland (rare). Going on tykerb and xometa.
going to be 76 hope to make it to at least 80! ! Old in age but young at heart...
shb
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Dear shb - Yup, my oncologist scheduled a MUGA test before I started tykerb. Harmless and painless. I am given to understand that tykerb and some heart conditions don't mix well. Best of luck with your chemo. SUE
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Treso: Great news! So glad Xeloda worked for you!
Yes, depending on a person's response to chemo, they do give breaks. There is a stage IV lady here in Abilene who has gone for 11 months without chemo now...gets scans every 3 months, or if symptoms present; so far so good, no progression, lesions under control. She did have rads to some in thigh and back too; but she knows it will come back eventually. She does get Zometa monthly. Don't know her history, but dx was in 2002 and recurrence in 2009. It is possible to 'live without chemo' for awhile if we can find the right stuff!! Everyone's cancer is different, their immune system different, and their response to chemo different. HOPE exists.
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Question about ABRAXANE? I've been on for nearly 3 months... started 3 weeks on, one off, now going to 2 on and 1 off (letting my marrow regenerate a little better). Really no bad S/Es except for appetite and taste, except once a week, whether I'm on or off it, I have a 24 hour period of intense body/bone pain. Random, but usually around day 4 of the week. Strange. My onc nurse said others have said it causes bad bone pain occasionally. Have any of you experienced? It happened on my week off this time and I was getting freaky because I was imagining the cancer progressing (stupid imaging). Usually when I have the pain during treatment weeks, I can imagine the chemo 'killing' the cancer cells violently (good imaging).
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Heidihill: How long were you able to stay off chemo after your first go around with Stage IV? I know everyone is different but, I'm very interested in other ladies' experiences. It seems as if many just take chemo breaks. I'm wondering how long some have been able to stay on the anti-hormonals after doing chemo. Is this something you did?
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Marybe: Thanks for the info on Kathy. Still curious about those mets. You are definately an inspiration to me. You have been through so much and still seem very positive. I love to see that. Thank you.
I am not in remission (which is why I don't want to stop chemo) as I still have the tumors on my spine at T7, L3 and L4 but there has been no change since the end of June. I totally agree with you about cancer being the enemy and not the chemo. Heck, I'd keep doing the chemo but my onc wants me to take a break. He seems to think I've gotten as much as I will out of this combo, hence, the anti-hormonals again. I definately want to stay on something (anything!). Do you take chemo breaks?
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Sueopp: I trust my onc VERY much. We have an excellent relationship. When I asked about stopping chemo vs. taking a break, he told me that it depends on the doc, old school thinking vs. new school thinking, where the oncs got their training, etc. He trained under Larry Norton at Sloan so, I am very comfortable with decisions that we make regarding my treatment and, if I'm not, I ask, hound, clarify.....he loves my lists!
The Xeloda has been great. Got rid of that liver met in no time. Taxotere has been a bit tougher but I asked for an aggressive treatment. I do believe I like the word stable. I will have another PET at the end of November when I finish my last round.
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K-Lo: What chemo are you on for maintenance and how often? I don' feel the need for a second opinion at this point (I posted to Sueopp above about my onc - I have a lot of confidence in him). When he saw the fear in my eyes about stopping is when he suggested the anti-hormonals again. I will have a PET at the end of November, take the holidays off from chemo and revisit options in January. I'm hoping to have another PET in January before I start whatever I'm going to start.
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Treso, Were the antihormonals still working for you when you stopped and moved onto chemo I would have been content to stay on those the rest of my life, but I went through them all and then they finally stopped working. The onco at MDA thought we should try they again since I had been off them about 2 yrs and sometimes they will work again, but when we did that they did not work again for me.
I took a chemo break after abraxne.....my onco said we could do a break, but not a long one....I was not in remission, but the tumors had shrunk a lot on the abraxane, however, I just could not take any more of it.....I got it weekly and did 22 weeks of it along with avastin. During this break I went to MDA and got an opinion and I think maybe I was off everything except for my zometa for three months? I would have to look it up to be certain. My cancer has always been slow growing. I do not recall the bone aches, Karen, just all the other horrible SEs,,,,,mostly the neuropathy, constant tearing of the eyes and the nails being infected. For me, it was a rough one,
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Treso, I had TAC chemo as first line treatment along with Zometa. This got me into remission. I was told in the beginning that if after six cycles I wasn't in remission I would continue with the chemo after my mastectomy. Fortunately I was NED after 5 cycles. But I was still scared to get off chemo. I started Femara after surgery and before a grueling 28 sessions of rads. To answer your question, I haven't had chemo since Feb. 2008, just Femara.
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Treso,
So glad you have complete faith in Onc. That's what it's all about. I'm on Xeloda0 -
Marybe: The antihormonals were not working when I stopped. I was on tamoxifen for 16 months when my bone mets were found (worked on many of my mets). Then, I did faslodex for 6 months when my liver met was found. So, I started my current chemo regiment.
Back to the nails questions since I'm a bit (a lot) unnerved about losing them (sorry for so many questions about this)...Do you recall how they fell off?
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Heidihill: Where are your mets and were you dx with Stage IV right out of the gate? I did ACT back in 2008 when I was first dx as Stage III. That's great you haven't had chemo since 2008!
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K-Lo: Where are your mets and how long have you been on maintenance Xeloda (and, if you don't mind me asking, what is your dosage and do you do the 14 days on and 7 off)? I think that's what I would prefer to do (Xeloda) insted of the antihormonals since two of them failed me on the first go around.
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Hey Treso, i started X July 24 with 7/7 cycles so I'm on 5th cycle, 3000 per day.
My mets are in the chest. Tumors popped up in the armpit twice and the last time, sept 2010,
we found nodules in lungs, mediastinum, hilar areas. Two growths under pectoral.
I'm hoping she will let me try Xeloda for another 8-12 weeks before next scan I had a horrible experience with my second chemo, just a bad reaction all around.
Hope the right one is there for you0 -
Treso, I had spine mets from the get go. Not being on chemo is great, but Femara was not a walk in the park either. The side effects have tapered off significantly at this point so I'm planning a sailing vacation this fall with my family!
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Treso...How soon after you started chemo did your nails start lifting? I just finished Carbo/Taxotere chemo on 9/6 and just in last 2 weeks or so, nails really tender, look bruised in the middle, like I hit em all with a hammer, if that makes sense. Anyway, am I likely to lose them? My toe nails are fine so far.
Heidihill - I too have had spine mets from 1st diagnosis, mid treatment scan showed some promise, well enuf that Onco no longer talking radiation on spine. What is Femara and how administered? Is it specifically for the bone mets?
My Onco is also stopping my chemo, don't know for how long, but I will remain on Herceptin, only schedule will change from once a week to once every 3 weeks w/an xgeva shot once a month. Just had Pet and MRI 3 days ago. Will see my Onco and Surgeon next week for results. Am glad everyone is so forthcoming on their regime, gives me some knowledge and questions to pose to my health team and to take with me in Oct when I get 2nd opinion from Cancer Treatment Center in AZ.
Sending positive, kickass thoughts and prayers to all!
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Memasue, femara is an anti hormonal in tablet form you take daily for estrogen positive disease, not just bone mets. Hope you get good news next week!
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My mother is diagnosed with breast cancer in 2008. She now has brain mets and now mets in her soine they have done chemo, whole brain radiation, gamma knife, and radiation to the whole spine. Is there anyone out there that is dealing with this aggressive cancer and is survivng it? u can email me at suger_angel_187@yahoo.com
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hey I have been on navelbine and avastin for 5 months ...very little side effects if any ..you will be fine ..one of the nice chemos...very best of luck...I am stable now and doing another 5 months maintainence i think
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Josephine what is your Mom's cancer profile (er/pr/her2)? What chemo or hormonal is she on ? There are many women here who have had brain mets and are doing fine and have been for years.
If you can get that info it will be a lot easier for us to answer you.0 -
MemaSue: I started Taxotere on 5/5/11. I started feeling pain in my fingertips and fingernails about 2 months after starting chemo. Then, I experienced what you're now experiencing. A couple of weeks ago, they started to lift (some, not all). When I did Taxol in 2008, my nails only got to the "bruising" stage that you have now. It's hard to say if you will lose yours or not. Perhaps, since you stopped chemo, they won't get any worse. That's what happened to me with Taxol. My big toes have just a tiny bit of that bruising and are sensitive. Otherwise, my toes have, so far, been spared.
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I have been off Chemo since Sept. 09, I was dx with Stage IV triple negative at 29 in 2008 it had spread to my lungs and liver.
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TexasKaren - your question on Abraxane. I just had my 2nd treatment on Friday. I have it every 3 weeks with blood tests on the other 3 weeks. I get some side effects as what I am treating for is rather uncommon - my abdominal cavity is filled with fluid and the goal is to kill the seedlings that have seated themselves in the lymphactic drainage system - I am also on Avastin as well. I have bone mets and I do get tremendous bone pain - we changed all my pain meds while I was in the hospital and now the pain is managed with methadone and dilaudid. However, I do get some breakthrough pain and that requires an additional dilaudid or sometimes 2.
But I too think of it as killing off the little buggers - kill cancer cells! Rah, rah...kill cancer cells. Rah, rah!
I like the new mantra!
Hugs to you and lets keep killing cancer cells!
LowRider
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hydeskate: That's fantastic. I love hearing that. Are you on anything at all for maintenance? How often do you have bloodwork and PET Scans done?
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No Maintenance, scans/bloodwork every 3 months rotating between x-rays and CT scans. The last scan was end of July the next is scheudled for Dec what exactly will depend on bloodwork and any issues I might be having. I had a PET when I was first dx and then after the treatment. My Onc is trying to give my body a rest since they went wild with the Abraxane giving me the highest dose possible and she wants to limit the radiation.
The resaon I can get away with not seeing her is I have appts. with other Drs. at the hospital (UNC) and I email her with any issues. That and they think that the sjogren's syndrome (auto immune disorder) I developed after my immune system came back is helping confuse the the screwed up genes I have that caused the cancer (I am BRAC 1 positive).
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Lowrider and all: Lift me up in prayer.... had a colonoscopy for rectal bleeding today and he said he found a 'suspecious' lesion.... biopsied it. How in hell could I get colon cancer with all the chemo I've been doing?!?! I'm not believing it, and it's going to be benign....... but would like some 'help' from all my sister angels out there in believing with me !!
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