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I'm hoping you lovely ladies can help me. I feel silly posting here, but I'm crippled with fear and unsure what to do. I was dx with stage IIa, grade 3, triple negative BC at the end of January. At that time, I had a CT and bone scan which were clear, however, my MRI showed a suspicious mass on my sternum. One radiologist thought it was mets, another thought it was a benign growth I was possibly born with. My BS originally wanted to biopsy the mass, but ended up consulting a team at Sloan Kettering for a second opinion. They looked at all my scans and suggested a PET instead - they said if it was cancer, there would be uptake. My PET was clear and it was officially ruled benign. I was assured up and down there was no need for the bone biopsy. Well, fast forward to today and I've developed daily sharp pains in my sternum and rib (cancer side). The pain started pretty abruptly about 3 weeks ago, just after I switched from AC to carbo/taxol. Both my BS and onc believe the pains to be a side effect of the taxol and have said there's no other scans to run since all mine were clear just 3 months ago. I'm having a very hard time accepting this. Yes, it coincides with starting the taxol, but it just seems too coincidental to be my sternum…and now my rib too. The pain is always in the exact same two spots and will sometimes radiate to my shoulder blade. I notice it once in a while during the day, but mostly at night when I lay down and when I wake up in the morning. Switching positions in bed seems to set them off more. I don't know what to do, but I have to put this to rest one way or another. My thoughts are absolutely consumed with this and when the pain sets in, I go into a sheer panic. I feel like I have 3 options. Push for another scan, but which scan at this point? We know the mass will show up on MRI... Push for a biopsy? Or try and trust this is the taxol messing with me? I'm assuming they'll do more scans when I finish chemo, before surgery? Should I hold out until then? I greatly appreciate any thoughts you could pass along.
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Ally
I know it is so difficult to be calm. I had horrible sternum pain after my bmx after during chemo. It lasted for over a month. The body goes through so much during all these treatments. If you have had a clear pet and the dr thinks it is ok then please try to believe them.
I have had my fair share of scares and it is very hard not to worry.
Hugs!
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hi Hun, I had to post because I too went through what you are feeling. I had terrible SE from everything I even had SE not in the book. For 12 months I had pain which was like shooting pain in the same place as you. It was worse when I sat down also if I went for a walk. I got very down and I thought I was stage 4 but was told it was the SE and it could take upto two years to get better. Anyway last month I was so down they gave me a bone scan and MRI and all clear. I was shocked because I really thought the worse. I now take my Tamoxifen at 6pm and can do more things. I still have problems but I do feel better in my head. I think it can take a few years. Xx
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Ally - Are you half way through chemo? Agree - the side effects are brutal. I see you have surgery scheduled for August. Yes, my MO did both an MRI and a PET/CT after chemo & before surgery. The surgeon wanted that info too. Unfortunately my tumors weren't totally eradicated. Surgery got them out then then I had more chemo.
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Ally you have gotten some wonderful answers to your question but I know it's still so hard to accept and move on. It is most unlikely that you will have progression while on active treatment and least of all on the regime you are on.........it's pretty powerful.
Try to relax a little and keep reporting your SE's to your onc........all scans are clear and that is a good thing.
Love n hugs. Chrissy
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hi ladies. Almost 16 months after diagnosis with brain, liver, bone and lung mets my mum seems so we'll. it's confusing. She has suffered anorexia for the last year and this carries on. She has chemo (navelbine) but her liver met still grows slowly. She has been on 1mg dex daily for a couple of months. And oh wow it has helped!! She is talking about getting her bicycle out! A few months ago she hardly left the house, was very forgetful and wobbly when walking.
Can I assume this is the effects of the dex? Helping her brain tumour maybe? Her head hasn't been scanned in a long long time. We don't know what's lurking inside there, they don't like to scan often. I am so try thing to reign in my excitement....with this being my first experience of terminal illness I can't quite get my head around the idea that she won't get better. Especially because right now she seems to be getting better! Anyone have any ideas how long someone with mets in so many places has lived? Like the longer estimates? I didn't expect her here now yet alone talking of digging out her bike! ....am obviously happy but a bit skeptical too...like its a trick....this positivity is brilliant but is also emotionally messing me up....enjoy now. I know. I am. I am so grateful.
Wishing you all love and laughter in these tough times xxx
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Hi Papillon.......it's so good to hear that your mom is doing so well! I would think, as you have suggested, that she is seeming so well due to the effects of the dexemethsone. Steroids are marvelous drugs!
There is no telling how long she will feel this way, it could be anything from a day to a year or two but eventually the Navelbine will no longer be effective at slowing her cancer. I'm hoping for yu that she has a good long time before that happens.
As you say, try to relax and enjoy the moments as they are all too fleeting.
Love n hugs. Chrissy
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a year to two even with liver and brain mets!? I struggle to find stories of brain met ladies. I have spent the last year telling myself that over 18 months rediculously optimitistic..so much so it's unrealistic. But this cancer beast really is an unknown entity isn't it!...
I can't help but feel its playing with me. My natural instinct is that this can't be real because this really doesn't happen to me. It happens to other people. On tv. Not me. Not real life. Having this really positive phase is a bit cruel maybe, because I naturally feel like things may actually be ok.....in the end...then reality crashes in and I break down again.
Mum saw her onc today, who doesn't want to see her or scan her for another 6 weeks. That's great news. He was concerned about her biking thoughts, as am I, but that's minor. She is happy. And for that I am so grateful... Ultimately if she thinks a bike ride is good then go mum!
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Papillon, yes this disease is very cruel as it will offer hope in the form of the really good days and as you say, only to have them crash in on you and leave you wondering 'what next?'
When I said a year or two it was more figurative than actual but as you have already found, anything at all is possible and miracles do happen every day.
Your mom is feeling like bike riding but I'll bet in actuality it will never happen.........she is probably saying that to reassure you that she is feeling really good right now.
I sort of had a similar conversation wth my daughter last night, about how hard it is to accept that even as I'm feeling good and not looking sick, that can turn on a dime and tomorrow find that I am in all sorts of trouble and how hard it is for her to accept that fact as she does not want to lose me either. Obviously you have a very close relationship with your mom and want it to continue and that is very normal. Try not to think of the 'what next?' and really enjoy the now.
Love n hugs. Chrissy
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thanks Chrissy. Love to you and your daughter. You are so wise xx
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Shoppygirl, Ali68, MinusTwo, Chrissyb…thank you all SO VERY much!!! I must have not clicked to get email updates from this thread. I didn't realize any of you had responded! You all have me in tears and I can't tell you how much I appreciate your comforting words. My symptoms have advanced and so the last few days have continued to be filled with worry. In addition to pain in my sternum and ribs, I now have pain and lots of pressure in and around my spine. If I sit certain ways, the pain radiates to my shoulder blades and other areas. Everything I'm reading points towards mets and not taxol, although it's hard to believe this would all come on so suddenly with mets. Coincidentally, my onc called yesterday to hold back my chemo (counts too low). I broke down crying and told her I was struggling to believe my pain was from the taxol since it's so localized and in such ominous areas. She told me based on my recent scans, she is "100% sure it's not mets and is sure it's the taxol." However, she agreed to do another bone scan for my peace of mind, which is tomorrow. If it's clear, I will just have to put this issue to rest. I can't go on worrying like this. I can't eat, sleep or concentrate. I'm so embarrassed and disappointed in myself for getting this worked up. I actually scheduled an appointment with my cancer center's social worker for tomorrow after my scan. I'm hoping she can give me some tools to work through these fears.
Does my worsening pain and pressure still sound like a taxol SE? I'm a person who tries to deal with things before they happen…it's always been my way of coping. In this particular instance, I wish I could turn that coping mechanism off!
MinusTwo - yes, next week I'll be half way through chemo and will do BMX, rads and recon in the fall/winter. I hope my surgeons run the same scans as you had.
Thank you all again so much for your responses. I appreciate them more than I can say.
(((Hugs)))
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Ally
Yes your symptoms do seem like not only from the chemo but also anxiety. Stress can do terrible things and the more you worry, the worse it gets.
Unfortunately our bodies are put through the wringer during and even after chemo for some time.
I hope the bone scan gives you the piece if mind you need! Let us know how it goes.
Big gentle hugs to you !
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Ally, for me, Taxol was the drug from hell. I had an excruciating experience with it. It was like living in a cage of pain, and pain meds just did not touch it. MO thinks it was all nerve related with the Taxol as I also developed neuropathy. I ended up only having 9 of 12 doses. There were breaks in between doses after my 6th dose.
Hoping the bone scan is able to help!
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Ally,
I got bone pain from neupogen shots that I had to take for low counts when neulasta didnt work. Pretty severe in back and ribs.
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Ally most of what you are describing are symptoms of stress and anxiety.......I think that besides seeing the social worker you need to ask your onc for some meds to help as well. I know this is all so very hard and seems even harder for people who like to be in control..........in this case, you need to learn to go with the flow and relax a little and I think you would find some meds would help you immensely to do that.
Good luck with your scan and please let us know the results.
Love n hugs. Chrissy
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Ally, I had terrible bone pain with Taxol. It started 2 days after the infusion in my lower back and spread over the following 3 days up my spine and out over my shoulder blades and leg bones. Honestly, the pain was much more constant and painful than my bone mets ever were.
Here's hoping it's only Taxol giving you trouble now!
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THank you in advance for your input..A friend with young children has recently been diagnosed with metastatic disease. Her 9 yo child had a meltdown in school and she's looking for help for her. I recomended school counselor and the Cancer Support Communitys' online live support..
any other suggestions?
Thanks again,
Soccermom
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Soccermom get your friend to check with her treatment center as they should either have a councilor on staff or can recommend one for her that deals specifically with cancer. I hope your friend gets the help she needs for her nine year old.
Love n hugs. Chrissy
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Thank you,Chrissy..Marcia
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Shoppygirl, Robin, Placid, Chrissy, Roses…thank you so much again for your responses and support. My bone scan was clear! I'm very relieved, don't get me wrong, but I'm still nervous about the supposed benign mass on my sternum that only shows up on MRI. I'm still wondering if that's been cancer all along and if I do, in fact, have bone mets that for some reason only show up on MRI. I don't know if I'm totally losing it and all this is just irrational fear - or if my concerns are valid and I should push this issue further for the sake of my health and prognosis.
I met with my cancer center's social worker yesterday and explained my fears and told her I was really struggling right now. She is going to speak with my onc and see if she'll run an MRI, if for nothing else, my peace of mind. I'm supposed to hear back today. I will continue to see the social worker on a weekly basis and hopefully work through this little breakdown I'm having. Again, thank you so much for your responses and sticking this out with me. I greatly appreciate it.
Hugs
Alicia
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Ally - Have you had a PET/CT? It's more radiation but they'll get "sparks" from hot spots where there is any uptake of the nuclear medium due to cancer. My MO swears by them. When they found my recurrence with the PET/CT, then they proceeded to do an MRI to pin-point it for the surgeon.
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MinusTwo - I had a clear PET back in February when I was initially dx. My onc believes that because this was clear, as well as my bone scan and CT, that there's absolutely no evidence of stage IV disease. As of now, she is saying no the MRI. I understand where she's coming from and I do believe bone mets would be very unlikely at this point. However, the fact remains that I have a mass on my sternum, a benign tumor to be exact, which only shows up on MRI. I'm having new pain in my sternum. Seems like the logical thing to do is take a peak at that tumor, especially since the pain has spread to my ribs and spine. I'm seeing her monday morning and will lay out my reasons for wanting the MRI. If nothing else, maybe she can refer me to someone who will monitor the benign tumor as a separate thing.
I desperately want to believe this is all taxol related. What's hard for me is the pain is also at times accompanied by pressure…and it never goes away. Everything I read about taxol SE's, says they only last so many days and at some point let up before the next infusion. My pain comes and goes, but has never gone away. Even now, after not having chemo this week due to low counts, I still have the same amount of pain and pressure.
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Ally - sounds like you're trying everything. Good luck w/the doc on Monday. Hope she'll do the MRI if only to give you some answers.
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after all this time I only just found the thread for family or caregivers of patients with stage 4. I do apologise for always having posted here. I will move over there. But you have been such a source of info Chrissy - thank you so very much. And thanks for putting up with my posts, even though I realize now they have been in there wrong place. I hope I didn't annoy anyone too much. Wishing you all the very best. Love to you all xx
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Papillon your posts were never a problem and I was happy to answer them. Please feel free to post here any time you like as you are always welcome.
Love n hugs. Chrissy
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cyber hugs to you Chrissy. You are wonderful. Really, you should get some sort of award for being so brilliant for everyone xxx
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I so agree! She is not only knowledgeable, but so kind hearted and empathetic!!!!
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And patient, supportive & always gentle...
Chrissy, You're the BEST......
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I concur! Chrissy, you are such an amazing, supportive, inspiring person just in this limited context -- I bet you are exponentially more amazing in person!
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Allydo, I wasn't on your regimen and haven't experienced your symptoms per se. I understand why you are so terrified. It does seem extremely unlikely to me that this is mets given all your scans and the fact that the pain has gotten worse during pretty aggressive treatment. The only thing I can say is, many of us, myself included, have experienced acute anxiety from mysterious symptoms that we feared were mets, had follow up scans which turned out to be clear, and had the symptom eventually go away. It sounds like that is what is happening with you. (Unfortunately, sometimes the scans obviously do NOT turn out to be clear, but thankfully that is not the case for you.) I do think if you are still consumed by all this anxiety you should see if you can get some kind of help, either talk therapy or medication if need be. Whatever you need to get you through this really hard time.
Also, I don't think this is a common side effect of rads (and I know you're not doing rads right now), but for me the day I started radiation it was like a dark cloud went over my head. It stayed there for almost the whole time -- went away about 24 hours after I was off the "whole breast" radiation and onto the "boost" (localized, less radiation). It was crazy -- I laughed and realized with a shock that I hadn't laughed since before I started rads. I was pretty much consumed with anxiety about random symptoms I was having at the time. About 24 hours after I was onto the boost, I said to myself, "MO said I can have that checked out in a month. I'm not going to let myself worry about it now." And I didn't.
The point is, all this treatment is really hard on your body. You might be experiencing a physiological-based depression as a result of the drugs, which depression might make it a lot harder for you to not drive yourself crazy with all this stuff. Which stuff is intrinsically depressing and anxiety provoking.
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