IBC lounge: roll call, support and just a good place to hang out
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Well, shycat, good luck with your scan. Keep us posted.
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Thanks Traveltext, will do. For my family's sake, I'm trying to act as unconcerned as possible, but I just can't help thinking that both CT and biopsy seems like a bit of overkill for "likely fat necrosis". Oh well, hopefully I can keep up this brave face for the next week.
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I hope it turns out to be benign shycat. It's been my experience that any time they even suspect something might be cancerous they immediately want to biopsy since that's the only way to know for sure one way or another, so I wouldn't read too much into that. An CT can't confirm that it's cancerous. For me it would be more stressful if they did the CT, said it looks suspicious but let's watch it for a while, and dragged out the "not knowing" period even longer (especially with IBC). Think of it as them taking the extra steps to take good care of you. Getting both done now will give you the peace of mind of knowing one way or the another right away. I guess peace of mind may not be the right term if it does turn out to be cancerous, but I always find the waiting part the most stressful; once we know what's going on and have decided on a treatment my stress level drops dramatically. Keeping my fingers crossed for you that it turns out to be benign.
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Thanks LoriCA. Yes, waiting for answers is the hardest part. After thinking about it, I believe I understand the logic: the biopsy is for that specific spot, and the CT is to look for other possible areas of concern that the ultrasound may have been unable to detect. I'll be trying hard not to read anything more into it than that.
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I don't have much to contribute, Shycat, except welcome to our group. We will all be hoping for good news with you.
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Lori, thanks for the explanation - it now makes sense to me. How is your skin doing?
Amarantha, I´m so sorry that you are in such a pain. As Lori suggested what about palliative care? I was referred to the palliative care unit of my hospital months ago. They not only work wonders with pain management, but it is also a relief to talk to doctors and nurses who actually understand what I´m talking about, and try to find solutions that respect my wish not to be totally drugged/foggy.
Traveltext, I sent you a kind thought two weeks ago when I appeared at my hospital for a doctor´s appointment and met two men having IV treatment for BC at the same time.
Shycat, better be safe than sorry so I think it´s good that they move fast with your scan and biopsy. I hope that the nodule turns out to be benign/nothing
It is also springtime in DK and all of a sudden pretty warm. I have slowly progressing lymphedema in my left arm. Does any of you know whether I should avoid the sun?
Wish you all a good day with no worries!
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Hello to all. Shycat here is hoping for fat necrosis. Traveltext what would we do on this thread without your support.
LoriCA and Armimantha, dear ladies your courage is so strengthening to us that lurk but don't post a lot. selizabeth you encouraged me in the early days, I appreciate you all.
Sorry if I missed anyone.
VAl
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ADDK, I'm not sure about the sun exposure itself, but being hot exacerbates my lymphedema. It gives me a good excuse to crank up the air when I'm fanning my hot flashes and gasping.
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It's always good to hear from you Val, hope you are doing well and enjoying a beautiful North Carolina spring. I used to live not far from you at Mountain Island Lake and I really miss how beautiful spring is on the east coast.
ADDK overall my skin is mostly clear now but there is one small area that is starting to concern me because it doesn't look as good as it did the day I finished rads and it's painful to the touch. Not sure if it is part of the healing process so I'm trying not to worry about it until I get my scans, or unless it all of sudden gets drastically worse.
I have no experience with lymphedema, hopefully someone else has the definite answer. I've read that you only need to avoid excessive sun to avoid getting sunburned.
Speaking of sun exposure - I've always read that radiated skin shouldn't get any sun exposure for two years, and that you should wear something like a rash guard over your bathing suit top. I asked my RO about it because I spend at lot of time in my pool and given the large area I had radiated I figured I needed to buy a rash guard ASAP. She told me I didn't need to worry about it, just protect the radiated area the same way I protect the rest of my skin - basically, don't let it get sun burned.
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ADDK Hmmm, Palliative care ...is that not what I am in already ? I'll have to ask about it. I think my oncologist is actually working within "Palliative care", but I may be wrong.
LoriCA it is fantastic that your skin is mostly clear ! Valstim, great to hear from you. Sbelizabeth - being hot sucks !! Shycat. :-) Welcome to you.
My oncologist actually called today to say I was right, lots of stuff is going on that the recent TEP scan caught - more activity in the spine, more lymph nodes, more skin (very thick on abdomen), both lungs have pleural effusions, which explains why I am always out of breath, and probably also why my ribs hurt so much. Though she did not say there was Ascites in the Abdomen. hmmm. And so she's going to put her mind to finding a new solution (I am only on cure 2 of Xeloda but it seems she has decided it is not working) - and I have an IRM scheduled in a couple weeks to see the detail of the bone mets. I go back on Xgeva for the bones. I don't quite feel we've gotten to the bottom of the reason I have so much abdominal swelling and discomfort, but whatever the reason, it seems she is hoping to find a chemo to solve it. I thought we had pretty much run out of chemo options. I asked about Doxil, but she did not know this name, I guess it is known by a different name in France. I find myself canceling social engagements I never would have sacrificed before, because I am in pain and also so embarrassed about what I look like !
Sleep is my friend. Best refuge from the pain. My husband is dealing with shoulder pain and toothache so he joins me in the painkillers and the sleeping. At least we can be miserable together.
Hugs to all.
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Lori, I´m so glad that your skin is looking good. I´m sure that the area of concern on our skin is just reaction to the radiation treatment. I have no experience with sun exposure and radiation, but the official advice in DK is to avoid sun exposure on radiated areas for at least one year (apply sun protection and cover with loose clothes).
Amarentha, I´m so sorry about the results of our scan. You should not be in pain! Frankly I wonder if your MO is sufficiently trained to deal with pain management. I´m in public health care and treated at a large hospital treating all kinds of diseases, i.e. with separate very specialized units. The different MOs that I see don´t find themselves competent to deal with pain management, so once my pain became a problem I was immediately transferred to the palliative care unit of the hospital. The staff there is specialized in all aspects of relief for terminal patients, including pain management, exercise, psychological care, social advice etc. I´m impressed how they manage my pain, and I´m not easily impressed.
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ADDK. Terminal patients. Wow, that sounds so drastic. I surely hope I am not exactly in that category yet. Not for a while yet, please ! Well I haven't up until now complained about pain at all, it is all so new. I've been given lots of things to juggle but have been hesitant to take. The one thing that is not given here is Naproxen, but I do have some my mother smuggled in for me, LOL, and took two this afternoon which really did the trick. Would you be willing to share what the pain management people have recommended that is really working for you ?
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Amarantha, Stage 4 of this disease is terminal, its the stage that requires the most drastic treatment, and patients undergo a series of drug regimens, one following another, with the frequency of new drugs dependent on the patient's response. Palliative care is sometimes started upon Stage 4 diagnosis, but more often as the disease progresses and complications arise or when myriad drugs fail to take effect. One of the prime aspects of palliative care is pain management, since keeping the patient pain free and relatively comfortable is a major goal.
You don't have to worry about the implications of being a palliative patient, rather you need to be comfortable that the medical professionals treating you have access to the best information relating to your stage, and access to the best drugs suitable for you. Always try to query your team to assure yourself that you are given appropriate treatment.
Val, keep coming back and saying hello. I know you've had a difficult time, but sharing can be therapeutic. I believe SBE knows this! Moreshoes, 'send' us a postcard from Spain, a couple of pics will do.
ADDK, I know nothing about the Danish medical system, but you seem to be negotiating it well. Your posts are most interesting.
Lori, all your posts need collecting together for publication. You really have a good handle on your treatment, you are inquisitive, scientifically literate, and have an amazing attitude to life in general. Plus, you are so generous sharing your knowledge here, that we are fortunate to have you back here so regularly.
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TT, of course I know that stage 4 is incurable, but "Terminal" sounds like "End Stage", and I am quite sure I am not in the "End Stage" yet. Of course the regimen I am under is considered palliative care, in that we understand no cure is ultimately possible; however, of course they do hope to fight back the cancer as much as possible.
Pain is something new for me, so we are working it out. I have been given five or six different things to juggle and try. To which I have added my hot water bottle. Things have changed for me very quickly, so my team is scrambling to find solutions. (I have been on Xeloda since April 1st only !) Plus of course, Inflammatory Breast cancer is incredibly stealthy, not to mention rare. I suppose its meanderings do take us by surprise.
On the whole, though, I am sure that I do not need to defend the quality of my treatment, or of French medicine here, among the best in the world. My oncologist is wonderfully open, and caring, willing to be contacted by phone and email, and remarkably responsive. I am being treated in a major regional center - a big University hospital. Experts share and debate their findings and their cases each Monday, and seek help or suggestions when necessary from colleagues in other major university hospitals - like Bordeaux or Paris, or even from abroad. These are all engaged in the cutting edge of research and treatment. (I thank my stars every day that I am no longer in America, where I would not have even been able to afford the first mammogram.)
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Amarantha. Now that you've clearly described the situation with regard to your medical team, I can rest assured that your treatment is most appropriate and world class. The access your oncologist allows is both unusual and phenomenal. I know the French medical system is excellent, since my daughter studied and worked in Paris for 10 years (she now has French citizenship) and was hospitalised with severe post natal depression after the birth of her first child. Needless to say, it didn't happen after the second!
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Hi TT, am so glad that your daughter has French citizenship, and that she was able to recover and have another child. I believe in France, and of course I am totally smitten with this country since my school days, I really love this nation and its people and laws, and I believe (gilets jaunes and all) that the government tries desperately to do its best for everyone, though of course nothing is ever that simple.
I've just returned from the emergency room, we were seen almost right away. I went for the pain in my back which had become unbearable. I had called my oncologist directly on her phone this afternoon about it, and she answered on the first ring, recognising my voice instantly, and agreed to notify the emergency people that I was coming. Of course I was hoping they could do something for my huge tummy, but they determined after much poking and an ultrasound that I did not have ascites, so my huge abdomen could not easily be explained that way unfortunately or could not be relieved by a hole punch in the middle and an outgoing tube ...
They did prescribe me some dissolving-on-the-tongue morphine, actual oxycontin for my intractable back pain, and when I left I felt much relieved. Tonight I am feeling about as great as ... the last time I had morphine, ahahah. It certainly is nice to be reminded what life is like when feeling good instead of miserable. I'll have that and a cocktail of other things for pain relief and then will see my oncologist in real life in two days for the next steps.
My husband was quite teary-eyed, last night, thinking that I was suffering, and that my death might be imminent, that he'd be all alone, and suffer unearthly torture of loneliness. I tried to convince him I was not going to disappear that quickly, people don't just die like that over night, even from cancer; and that I would always be with him. And even after, when I am gone, I would come and tease him, hide his sucrets (always going missing), and his milk for his tea, do away with one sock out of each matching pair. And he said he would always put a plate for me at dinner. That sounds sort of maudlin doesn't it. Well it was quite a poignant moment, because he has almost never expressed this kind of sadness before. What a relief tonight to be feeling better enough to to reassure him.
Last night - I guess I already had heard about the synagogue shooting - I dreamt I was in a synagogue of sorts, all stone, and we were set upon by huge scary thugs, intending to do away with everyone. I decided it was a good time to scream really loud for help, which I did, then darling hubby woke me up (he said I screamed loudly and very high pitched. Perhaps I've gotten my high C back ?) and I was saved.
That's it for today's report on not-so-real life adventures for the lounge.
Best wishes that everyone be lifted and comforted and find solace wherever it comes from.
Hugs to all
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Amarantha, dear friend...I'm so sorry you're enduring this crapalactic stuff. Like your hubs, I'm relieved that a pain control approach is successful for you, and that you're feeling better.
Your description of grief, and preparing for loss, wasn't at all maudlin. It was moving, and my eyes are stinging with tears.
And a nightmare, on top of everything! Spray your pillow with lavender and think calm thoughts tonight.
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I'm sorry you had to make a trip to the emergency room Amarantha. I guess it's a good thing that you don't have ascites, but on the other hand it must be frustrating that they don't know what is causing the swelling and pain. What was wrong with your back, pain from bone mets? Glad to know you have good pain meds, it does make all the difference.
It's so hard on our spouses, that's the worst part of all of this for me, seeing my husband struggle to come to terms with what is happening. Wish I had something inspirational to say to you or something that would make any of it easier, but I don't. There's nothing inspirational or easy about it. On a lighthearted note - because of what I went through early on, my husband still makes me text him when I wake up each morning so he knows that I'm alive and he panics if I forget. I tell him he's being silly because I'm doing so much better than I was back then and there's absolutely no worry about me not waking up. I gave him a good scare a while back, so I figure if something that simple gives him the peace of mind he needs, so be it. But God forbid if I'm busy or outside and don't answer the phone immediately when he calls, he goes into all out panic attack thinking the worst and starts calling and texting every five minutes!
The nightmare might be from the morphine. I used to get some really wild ones when I was on morphine.
I used to hate the word "terminal" too but that's the word my oncologist uses to mean that it's not curable, it's going to kill us. I think the legal meaning is that the person is expected to die within six months, but that's not how it seems to be commonly used in the oncology world (and I don't think they use terminal with oligometastatic people because they still attempt to cure). Now I find that I'm using it more often myself - "terminal cancer" - when it's apparent that someone doesn't know what Stage IV means.
TT thank you for your kind words.
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Dearest sbelizabeth and LoriCA, thank you for your sweet words. I'm not sure what is causing the back pain, they didn't find a reason, but I suppose it is the weight of the abdomen pulling me all out of shape - or else it has to do with the bone mets, or maybe the fluid in the lungs?? I only have one more day to wait before seeing my oncologist. Hopefully she will have some ideas. The ER suggested a sonogram. The last time I felt this much pain in ribs, I had pneumonia. That is clearly not the case atm though. I do believe somewhere deep inside I must know what it is; often I can do a meditation sort of thing, and get an image of what is going on. Probably just muscle strain.
The nightmare was most certainly from one of the drugs, did not have the morphine yet, but probably from these drops I was given for stinging pain - Laroxyl, I think it must be a pretty dangerous drug.
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well heck folks, I had my apt with my oncologist. She took one look at how pale I am, saw the huge tummie, heard my pain, saw the stingey morphine amount prescribed by ER and decided to hospitalise me.
So here I am in the actual pain control ward. I saw the nicest lady doctor alive, she tweaked amounts of painkillers after hearing my entire story... was so adorable that hetero me fell in love with her on the spot, and hubby loved her too. He has been my saviour, but was having a very hard time today. It's really tough on him just now.
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I just received my biopsy results: benign reactive lymph node, no sign of malignancy.
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Oh our dear Amarantha. I'm so glad you are getting relief, and hope this helps you. They have so many things available now for pain, but unfortunately only those in Pain management have access to them a lot of the time.
Hugs to you. Thinking of you TT, sbelizabeth, LoriCA and all others going through this dreaded disease.
In my case it's been 3 weeks since having injections into my hip joint. Was a harrowing experience. They hit a nerve, so now it's wait and see if it regenerates, if not, more therapy. I went from walking with a cane, to needing a flexible walker. Arghh. For arthritis that is this bad, not a lot of options. Though I take supplements that are really helping with the nerve pain.
Could be worse, but could be better. Trying to stay positive through all of these occurrences.
Val
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Amarantha, it's cool for us to fall in love with our doctors, regardless of their genders! So glad you'll now get proper pain relief.
Shycat, that's wonderful news.
Val, Nerves recover pretty quickly from a needle jab. Arthritis is a debilitating condition, and you have been dealing with it for a while. I hope you can get back to the cane soon.
Lori, I'm not sure terminal has the same legal definition everywhere. Perhaps, yes for insurance purposes, but new treatments today push any defined timeframe right out of kilter. Love your text crazy hubby.
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Amarantha I'm glad to hear they are taking your problems seriously but sorry it landed you in the hospital. I hope they figure out what is going on with the pain and swollen abdomen. Hopefully they get figured out quickly and get you feeling good and back home very soon. Hospital stays are no fun. Will keep you and your husband in my thoughts.
shycat that's great news!
Sorry to hear about your troubles Val.
TT apparently the same definition isn't even used across states here in the US, which can each have different laws. The definition of "terminal" really comes into play when discussing things like Right To Die (assisted suicide) laws and when someone qualifies for hospice, so I had remembered the six months definition from when California's Right To Die law was revoked and then later reinstated. Research and data geek that I am, you got me curious and of course I had to look into it. I found a paper discussing the very subject of how little agreement there is on the definition of "terminal" and other end-of-life words when discussing a cancer patient in the clinical, research, and legal context, even in US Federal Law, and the need to define the term(s) whenever used - "Interestingly, we also found that the U.S. Federal Code provided four different survival durations (less than 24 months, 12 months, nine months, and six months) for the term terminally ill in four different sections.".
If anyone wants to geek out like me, here's the paper. The research did include European, International, and multi-national sources, so it's heavy on US sources but not entirely US-centric - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3870193/
When I was first diagnosed I asked my MO if I was terminal and he said yes. I really should have asked what definition he was using - that I have a terminal illness from which I won't recover (it's going to kill me), or that he expected me to die within a certain timeframe. I suppose it really doesn't matter until it affects what rights I may or may not have.
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Lori, you bring up some very good points. "Terminal" is vague and definitions are all over the map. I suppose anyone with a Stage IV diagnosis is terminal, but it sure doesn't mean it's time to pick one's self a lily and lie down to look for the light. With my current nurse-consultant gig of cardiac arrest data, I'm horrified at how many families are clueless regarding their loved one's wishes for end-of-life care. Many times when paramedics are called for very elderly and sick individuals who have suddenly collapsed, no DNR documentation exists or can be found.
When California's "Right to Die" legislation was enacted we had to figure out what to do when someone panicked and called 911 after an individual had ingested the medication. It's sure complicated.
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SB funny you mention that - I had just posted in "Death and Dying" on that very topic. Laws are different in each state but in California most people don't understand that DNR is a pre-hospital document (for EMS), POLST (Physician Orders for Life Sustaining Treatment) is the document for the hospital (they can't legally honor the DNR because it's pre-hospital) that covers CPR, feeding tubes, ventilators, etc. and the Advance Directive covers everything else - whether or not to prolong life through artificial means, whether or not you want pain relief even if it hastens your death, what you want done with your body (burial or cremation),a bunch of miscellaneous stuff, and the appointment of agents (with POA) to enforce your decisions. You really need to have all three documents on file in California.
The Advance Directive is specific to each (US) state, anyone who is interested can find them here, along with additional information about end-of-life decisions - http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289
I have discussed my decisions with family members and made sure each of my three designated agents have a copy of the documents. Filing the documents with my MO sent the info to my entire health care system, so every time I check in to the hospital they always confirm that my documents are in place (and then I re-confirm that if my heart stops during surgery they will still attempt to revive me haha).
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Hi everybody, I´ve been off these boards for some time. Amarantha, your posts literally make me cry. I can emotionally handle the fact that my cancer will kill me, but I´m completely unable to handle the suffering that I´m causing people around me. Pain sucks, so I´m really glad that you get some relief.
Lori, how are you doing?
Shycat, so happy about your biopsy results
"Terminal" in DK is defined as the patient being seriously ill or dying, and life-prolonging treatment is no longer relevant. I think the definition is used to legally define the actions that medical professional are allowed to take, and to govern the rights of the patient under our various social security acts. I use the term to shortly communicate that I will die from my cancer.
I recurred about one month after finishing my stage II treatment. Once the result of a biopsy of my 1x1 inch rash was available, the MO that I saw to get the result said: "Your cancer has recurred. You will die from this, and our job is to control how you die". Looking back, it´s amazing to see how the same MOs changed attitude from one month to the next. It went from "we´re going to save your life" to "you´re gonna die, and there is nothing we can do about it". So in practice, "terminal" for medical professionals in DK seems to mean giving up on the patient in advance.
My skin mets are really thriving. It now takes three 7x7 in. bandages to cover them. My mets are on my left (mastectomy) side. I never look at my mets, but because I´m having severe pain in my right breast I took a short look: I have a nice red rash around the nipple :-(
I´m a weirdo. I´ve had a chat with my cancer. I´ve offered him (yes, it is a he) to buy him a nice house that he can move into. If he do so I have promised him that he will no longer be attacked by chemos, targeted therapies and other stuff that he doesn´t like. He can lean back in his beautiful house, and just grow and grow. He has not yet replied :-)
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ADDK I hope "he" answers in the affirmative.
I have a question for your gals. Today I left the hospital on "permission" just for the weekend. In getting out of the car, I lost control of my bladder for the first time since I was three, and it made me cry the same way. I was between two cars. Tonight, getting up to go pee, the same thing happened, as soon as I stood up. Total loss of control. Do you think this might be this a sign my spine mets have affected the bladder nerves or something, or is it an affect of the high doses of morphine making it so I can feel the urgency ? (hmm, or both ?) Well I must admit to feeling quite distraught about this. It gives a new meaning to "I can't take you anywhere".
Lots of love, not at all intending to make anyone cry. I'm in a bit of a crisis I guess, but I know from your experiences that this too will be handled, until the next thing, LOL.
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Amarantha, Opioids such as morphine can interfere with bladder contraction and cause or exacerbate constipation.
https://rcni.com/hosted-content/rcn/continence/causes-of-incontinence
Best to try to pee more regularly rather than wait until your bladder is full.
Best wishes.
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I haven't personally experienced bladder incontinence from morphine (although the constipation was brutal until I learned to get it under control). Harvard has a good list of the type of meds that could be a possible cause, not just opioids but also meds like muscle relaxers and antihistamines - https://www.health.harvard.edu/bladder-and-bowel/medications-that-can-cause-urinary-incontinence
It's not uncommon for Stage IV people to deal with bowel and bladder incontinence, and it can be caused by a few things besides meds - spinal compression mets are a frequent cause, brain mets (which would be a big concern if you were HER2+), other mets in the pelvic region, certain chemo drugs, and apparently even hormone suppression can cause it. It could even be stress-related. You might want to keep a journal to try pin down the cause especially if you think it might be related to one of your meds. That would be best case and then a simple change should be enough to stop the problem. You should definitely discuss with your MO, especially if you have spinal mets. When is your next scan?
Not to make light of it because I do know how embarrassing it is, but look on the bright side, at least you can wear "adult diapers" and get out of the house if you're up to it. I had bowel incontinence for almost two months that turned out to be due to a chemo drug (I was scared to death it was from my spinal compression mets) and there was no way I would risk leaving the house even wearing one. I cried nonstop every day because I was so humiliated. They make several specialty products, better than the Depends you would find in the drugstore. A woman here who is dealing with both bowel and bladder incontinence pointed me the right direction but I'm sure you have different sources there and don't need a US-based company. Hugs, glad that you're getting to spend the weekend at home.
ADDK both times so far mine spread from one breast to the other, that's why they had to expand my radiation plan to include half of my left breast. What chemo are you on now? Really hoping they find something that works for you. I'm just biding my time, waiting for scans. MRI next week, PET/CT two weeks after that.
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