If you are not Stage IV but have questions, you may post here
Comments
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Thanks Mods, perhaps now we can all get back to where we were.
If you have asked a question that has not been answered, please, can you repost them as they may have gotten lost amongst the detritus.
Love n hugs to all. Chrissy0 -
Thanks Chrissy and Moderators,
Can we come out again and read posts with questions and support each other.
Ignore is a great button.Use it and don't comment on it.
Peace, blessings and happiness to each and everyone.
Moira
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Hello ladies this is only my second post but I really need your opinions. I finished my last chemo february 14th and have had lots of lower back pain and sciatic pain ever since. Because of this my oncologist has ordered a bone scan to rule out the possibility of bone mets but feels the odds are slim that I have any. Now saturday morning I woke up with pain in my left shoulder that I felt was due to sleeping on it funny. It was painful throughout the day but nothing too crazy. Well this morning at 5:00am I was woken up by terrible pain in this same shoulder and I could barely move it. I went to emerg and the doc immediately did a nerve block to help with some of the pain and ordered xrays of the left shoulder. He could tell I definitely didn't have any fractures but there was a shadow he wanted the radiologist to read. The report came back as follows. "on the lateral projection there is an area of lucency in the posterior aspect of the humeral head. Suggest a bone scan to exclude a lytic bone lesion. there is no soft tissue calcification". The doc said it was a possibiltiy it was bone mets. He gave me some pain patches and a topical cream and told me to keep taking my hydromorphine for break through pain. It is really painful still. Could any of you ladies tell me if this sounds similiar to what you have encountered with bone mets? Thank god I already have a bone scan scheduled and its only a couple days away. I really appreciate any thoughts,
thank you
brenda
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Hi Bren. It sounds like your onc is well and truly on top of your treatment and making sure there are no nasties lurking in your lower back by ordering the bone scan. I was reading that one of the side effects of Cytoxan can be lower back pain so maybe what you are feeling is just that SE. As for the pain in the Humeral head and the report on the X-ray, it is possible that that is a met but the severity and rapidity of onset of pain is unusual. What ever it is, the bone scan that has been ordered will tell you for sure.
Hoping all is clear for you.
Love n hugs. Chrissy0 -
Just a thank you to chrissyb and learnin...I was reading through these today to learn things for a friend, and I realized that I never thanked you back in August for your helpful replies.
So sorry about that!This is a great thread and I'm very grateful.
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Ladies, I'm looking for research info on chest wall recurrence.
Does anyone have anecdotal evidence regarding the effectiveness of chemo (DC) on Er/Pr + CWR? I'm aware that it is very effective on Er/Pr - but there is no data that indicates DC has a better effect than aromatase inhibitors for +CWR. My Onc was not aware that hormone status is known to flip from + to - with CWR and I had to ask to have mine rechecked, which is concerning.
I come here for the info I know I need to make the best decision for my tx because after 3 primaries and now a CWR I have no doubt that our response to tx is completely individual; and more importantly, the women here collectively know and have experienced far more that any individual doctor could.
I greatly appreciate this thread and the information you good women of IV share, using your precious time to answer questions.0 -
Thank you chrissyb for your response. I really appreciate it. I have actually had problems with this area before but just always thought it was from sleeping funny or something. It was jsut never to this degree of pain before.
thanks, brenda
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Hi everyone. I've been reading this thread for a few weeks. I am not stage IV, but have been diagnosed with a recurrence within 5 months of finishing treatment. My MO has recommended a combination of Xeloda and Ixempra to treat it. He said that he wants to treat it as metastatic, even though right now I am not considered metastatic, due to the quickness of the recurrence.
From what he said and what I have read, this combination has been proven to gain a few months before a new recurrence. If that was "several years" instead of "a few months" I would probably feel a little better about trying this first.
My question is this: Do any of you ladies have experience with this combination? If you just read the fact sheets, it's scary. The list of SEs is a mile long. I know my chances of having all of the SEs is very small, but T/FAC kicked my behind and I want to work at least part time during chemo. Is that possible?
Thank you for any input.
Phyllis
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Hi Phyllis,
Cancer is truly the gift that keeps on giving, isn't it?
I have no experience with Ixempra, so I can only comment on Xeloda.
I did 8 cycles, 3 weeks on 1 week off. Some do 7 on 7 off, depends on onc. 8 cycles took me to NED, so great for me.
I found it pretty ok to do. Did get some hand and foot problems but make sure you use a really good skin moisturiser and keep on top of it.
It is so individual that it is hard to know what anyone will experience. Watch for diarrhea and fatigue. They can be common. Didn't happen to me but there is a xeloda thread where ladies mention it. Check that out too for helpful advice.
Each response is different so how long it might work is totally unknown. Just have to hop on the boat and ride the rapids.
Follow the instructions careful for xeloda. Half hour after food and 12 hours apart.Seems to help doing it right.
Hopefully someone might have been on your combo and can comment but thought I would let you know about xeloda.
Moira
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Phgraham, I am through my second cycle of Ixempra/Xeloda and another lady is starting today.
I'm not going to kid you the first week I was kicked to the curb and felt like hell. However this second infusion I have very manageable SE's. lousy taste in my mouth, lower appetite, some D.
I'm on a 3 week schedule. Infusion plus Xeloda 1500mg twice a day for 14 days on and 7 off. Then start over. Scans in a couple weeks.
Look down the list for the Ixempra thread I started.
I hope it is not to evil to you.0 -
Thank you for your response chrissyb.
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She,
I don't have any info on chemo's effect on Chest Wall Recurrence, but I do know my daughter had great response to neo-adjuvant chemo of AC x4 and then weekly Taxol x12. She has IBC which is ER+ PR+ according to biopsy back in August. I guess we'll know more when she has her surgery next week and we get the pathology report.
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Moiralf and Chickadee,
Thanks so much for the information! I went to both threads and read thru them, but I'm sure I will refer to them often. The Xeloda list of things you need is great!
Chickadee - It sounds like your first week was just horrible! I'm so glad that your second round went much more smoothly. I will have a 3 week schedule also. Ixempra will be given at 40 mg/m2 IV every 3 weeks and Xeloda at 1000 mgm2 PO 2x a day 2 weeks on and 1 week off. So I may be getting a slightly higher dose of Xeloda, but that's from my notes and not the prescription itself. I will double-check it when it arrives.
I don't really feel like I'm in great condition to start this, since I just finished rads at the end of August, but I guess that's the card that I drew.
Will you need neulasta or Neupogen? My MO warned that I may need that again. It was definitely not my favorite thing with FAC. The IV Benadryl is my favorite thing!
I will need to find a painkiller that does not cause hallucinations, low blood pressure, migraine headaches or barfing. That covers codeine, Vicodin and tramadol for me. I guess we will have to assess that at the next appt.
I finally got the pharmacy that the MO uses for Xeloda and my prescription plan, Medco/ExpressScripts talking to each other. They resolved the $449 copay per cycle issue. Medco will cover it if they fill the prescription.
Chickadee, good luck and I will be following your posts.
Thank you both.
Phyllis
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Thanks Wanna Cruize, I've already done AC for triple neg and tamoxifen for pos as well as bilat rads. About the only stat I've been able to find is a 1% difference between doing and not doing TC with pos CWR. That's so not worth doing it.
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I do not know where to post this question, so I thought I would come here.
I am really confused and scared. Saw my bs for my post op appt, (bmx) she gave me a copy of my path. It states that there was one lymph node 1.5mm with focal extracapsular extension. Before chemo, when I had my port placed 4 lymph nodes were taken and 3 had cancer w/one extra cap ext.
I thought the dose dense ac&t would have killed the cancer in my lymph nodes.
Warmest regards0 -
Ladies - do not understand why my taking a position is rude. Based on experience, I made, stated my point, something I considered might be of value to one or two of you. Interesting to me, for a few, PMs did attest to the point's validity.
Best Regards and Continued Success in Getting Answers to your Most Important Questions :-) BTW, that striking photo of Suzanne and I was taken last Easter.
Wayne0 -
Hahaha!!!! Didn't work..
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What didn't work Ms macyhen111?
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a sick, no pun, group, I simply asked ms macyhen what she meant by "Ha Ha Didn't Work" and your moderator chose to delete. Go figure.
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Suggest that those who are serious about learning more about MBC, GoTo MBCN.org
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Can someone please help me? Not sure if the sans chemo (Wayne) has pushed members away from this particular forum.
Yesterday I posted a concern here. If I should post it somewhere else, please tell me where
Warmest regards0 -
Michele, with apologies, I am not clear as to what your question is and that may be a part of the problem regarding no responses. Could you please repost your question? Thanks!
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I do not know where to post this question, so I thought I would come here.
I am really confused and scared. Saw my bs for my post op appt, (bmx) she gave me a copy of my path. It states that there was one lymph node 1.5mm with focal extracapsular extension. Before chemo, when I had my port placed 4 lymph nodes were taken and 3 had cancer w/one extra cap ext.
I thought the dose dense ac&t would have killed the cancer in my lymph nodes.
Warmest regards
Sorry, guess I would like to know what is done for the lymph node that has been leaking. Radiation is next, however it is for one certain area. I maybe so confused that I do not know how to ask.0 -
Hi Michelle, sorry I missed your original post. To my understanding, chemo usually knocks out any cancer that is in the lymph nodes but sometimes there is still some left. This is where the rads are used to mop up. Once that is complete, you will either be using Tamoxifen or an AI (Arimidex, Aromasin or Femara) as the insurance policy as they will by various methods starve the cancer and so it will die should there be anything left once you finish chemo and rads.
Hope this helps.
Love n hugs. Chrissy
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Thank you Chrissyb!
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Dear Ms michele2013 ~ hopefully those with serious needs/interests as is yours, will continue to post as they have been. If they do not like my experience-driven inputs, that is their problem. Pushed way? Lame at best. Members here are stronger than that. That said, surely Ms Chrissb will delete as she deems appropriate/necessary.
Maybe a male pipping in here is the problem. Yes?
Wayne
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Wayne, you do know you are being a distraction on this discussion. The discussion is "if you are NOT stage IV but have questions post here.
1. Your wife IS stage IV.
2. You ask no questions.
3. You want to rationalize your decision for your wife to discontinue standard treatments.
4. You want others to follow and agree with your decision. Trying to convince that you are absolutely right and there is no other way.
5. Your wife has been in treatment for 18 years, with the last five being stage IV.
6. Your wife's mets started in her bones - one of the easier areas to control for long periods of time.
7. Your wife had a tumor on her liver which since you have discontinued traditional treatments, has TRIPLED in size.
8. You seem to believe that since there is no cure for Stage IV, that it is a waste of time and effort to try.
A. We on the Stage IV forum are very aware that there is no cure.
B. We are aware that we will be in treatment for life.
C. We are aware of the results that will happen if we stop treatment (are you?).
D. We are here to help each other, to love each other, to make days easier, to share information on what is working, what isn't, and how to live with quality of life despite the side effects.
There are several forums where you may have some credible input. Alternative treatments, palliative care, caregivers of stage IV, etc.
There are patients on those forums who have stopped treatments for whatever personal reasons they have. There you would find those who share some of your thoughts and ideas.
Please, try to follow the context of the boards. Read the titles of the posts, and determine if your comments are appropriate to the discussion.
We on the stage IV forum would move heaven and earth to have 18 years as your wife has had with treatments. We deal with the side effects because of the love and caring that fills our days. At some point each of us will decide if and when it is time for us to go. We will do it with grace and knowledge, without trying to grab a group to follow our path. We each have our own path to follow. We respect that.
We are asking you to respect that. PLEASE!0 -
Thank You scuttlers, well said. I sure hope he takes heed because it is a little distracting to see all the ignore labels. Makes me not want to come here sometimes, but I do because I get very good info here. Dueces Wayne, Peace Out!!!
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Hear hear, Scuttlers! Like Macyhen111, I too am hesitant to post here. It is a huge distraction to have someone like Wayne upsetting these fine ladies.
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Ladies, I have contacted the Mods re Wayne. Please don't allow him to distract you and if need be, please use the block button. Don't acknowledge him in any way by speaking of him or to him.......to us he does not exist.
The Mods are looking into what else can be done within the boundaries of the community rules.
This forum is and always will be open to any who have legitimate questions regarding their health.
Love n hugs. Chrissy
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