If you are not Stage IV but have questions, you may post here
Comments
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Countingdays - Thank you for the kind words. My mom's treatment out here has been pretty stellar thanks to an amazing oncologist who has cared for her since her original diagnosis. He may not be the chattiest of oncs and may have the kind of demeanor that puts some people off, but he is thorough and persistent and if it wasn't for him we would have probably accepted her first few negative biopsies and not gotten her the treatment she needed. Alberta is beautiful! I used to be a flight attendant and spent quite a bit of time in different parts of your province. Always a great time
Alyon - My mom was diagnosed Stage III and went 11 years before her cancer mets appeared. Hers also seemed to come out of the blue. She had no history of breast cancer in the family (one possible ovarian cancer in an aunt) and she had regular mammograms which were fine. We believed that since she had gone a decade without recurrence that she was in the clear. Not so. It seems to be a crapshoot though as some go so long without a recurrence, some never have a recurrence, and then others with a good prognosis find themselves with a recurrence months later. We just don't know and have to realize that worrying about it doesn't help and only takes away from enjoying life and those we love. I know it's easier said than done, but like Michael J. Fox once said:
"If you imagine the worst case scenario and it happens, you've lived it twice."
Now, onto a question from my mom that I am hoping one of you can answer:She had a good CT scan in July and the onc has ordered an MRI (she hasn't had one yet, only CTs and bone scans). He said it's "just to get another look and to have it on file". Naturally, that worries us! But what my mom wants to know is how long does an MRI of the thorax and spine take? She is somewhat clausterphobic but refuses to take sedatives or any kind of anxiety medication and is planning to just suck it up and get through it. She is still having her cough and isn't sure she will be able to stay still because of it. Has anyone had one of these and have an idea how long she will be in the machine?
((Hugs for you all))
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Hi Canadagirl your mom's onc wants a base line MRI to go with the other scans and it's not at all unusual to do this. It just gives another view of whats going on.
MRI's do take quite some time........I haven't had one as extensive as your mom but the ones I have had took about 40 mins so I'm guessing your mom should expect to be in the machine for at least an hour. I am also a bit claustrophobic and went in thinking I could get through with out something but if I were to have another I would certainly ask for a mild sedative to help.
I know you said your mom doesnt like any extra meds but when it comes to an MRI I think it wise to ask her doc for something as it will make the whole process a bit easier.
She will be able to tell the tech if she needs to cough so they can pause.
Love n hugs. Chrissy
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Thanks Chrissy! She had a brain MRI a year ago before the mets because of a hearing problem. She managed to get through it with only one quick "break" because she was feeling clausterphobic at first but is definitely feeling a little anxious about getting in there again today. I'll keep trying to encourage her to ask for a sedative so she can get through it easier. It's an evening appt. followed by a 1.5 hour drive home so anything that will help get her through it is a good idea I think! I'm driving and keeping her company at the appt so will see what I can do
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Canadagirl, its a good thing that you are going with her and should she give in and get a mild sedative she will be able to doze in the car on the way home. Hoping it all goes well for her.
Love n hugs. Chrissy
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canadagirl - just popping in to wish your mom a stress free MRI. Hope she makes it through with no problems.
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Thanks ladies. I just popped over to her place for a quick visit and she asked me to pass on a thank you from her as well. She's still saying no to the sedative but has agreed to headphones with music and a towel to keep her eyes covered this time. We're making progress! Haha!
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Canadagirl, the headphones are a great idea as well as the towel for her eyes.......hopefully she will lose herself in the music and it will be done before any claustrophobia can intrude on her well being.
Love n hugs. Chrissy
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Thanks barsco. Mums onc didn't have anything helpful regarding her lack of appetite..
Mum was told that her last MUGA scan showed her heart pumping efficiency (wrong term i am sure, I apologize, I forget the right words!) was down a bit so he is considering taking her off herceptin for a month and said that should allow the body to heal itself.
Is this a common thing does anyone know? And isn't it likely to happen again after the break? hER2+ without herceptin isn't good right?!...will one month make a difference?! Surely it will? Does it mean herceptin is starting to fail for her maybe? Sorry, so many questions..I know, I should ask her doctor but I live in another country so haven't been to any of her appointments with her.
Massive thank yous to all of you brave inspirational women xxx0 -
Hi Chrissy and Barsco
I had the results of the biopsy on my left lacrimal gland yesterday.
In brief, the good news is that there is no cancer in the gland!
The mixed news is that there is inflammation of the lacrimal gland so the ophthalmology team want me to have a blood test and xray because they think I may have sarcoidosis.
http://www.nhs.uk/Conditions/sarcoidosis/Pages/Introduction.aspx#outlook
As long as the tiny lumps don't affect the major organs, I should be fine.
Will not know for sure until the results are known, however.
Really did think I was done with all the tests but apparently not!
Kind regards
Alice
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Well, mother went in to get xrays/ultrasounds, at it was all clean and meta free. (thank God, or whatever higher power, karma, faith, what not) They say that the course is now – biopsy (to see nodal involvement and to find out receptor status), neoadjuvant chemo because it is LABC (when mammography, ultrasound, and physical examinations declared it T2 N2 G2 or 3), and then on to surgery, followed by more chemo and radiation. I am breathing a bit more easily, but, I'm still frowning upon their decision to not do an MR/CT. They say that since the x-rays are very very clean, that there is no worry. Not sure if mom needs the added stress of MR/CT when she is basically starting chemo in the next week or the week after. Still – I'm confused, that's true. But hopefull!
What do you ladies think about the scanning thing?
@ Alice – glad your gland results are good! Also, hoping that you don’t have sarcoidosis, because it is a nodul-affecting disease, and it could give you grief when in lung and liver noduls, since sarc nodules light up oh xrays and scans – and it could scare the beejees out of you. Pretty sure no cancer patient wants anything to light up anywhere, so I hope you are in the clear about the sarocidosis diagnosis as well! All the best!
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papillon - sorry that your mom didn't get any resolve on the lack of appetite. It sometimes takes a very concious effort to get any nutrition and some calories into oneself. Sorry I don't have any info regarding the herceptin. I know that others have taken a break from it and other treatments when the body needs to just have a rest. Sending best wishes to your mom.
Alicethecat - HOORAY for no cancer found in the gland. Sucks that there are more tests to follow, but it is the only way to get a definite answer. Hoping that there is nothing of great concern found.
AlyonA - very happy that no mets were found on your moms xrays/ultrasounds.
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I realized I hadn't gotten back to this thread after I saw my dr about my shoulder pain. He thought it was just muscular and said to give it two weeks before he'd do an x-ray. By then it actually had started to improve and it's completely gone, so hopefully that was that.
Pappillon - Sorry to hear what your mother is facing. I hope they can find something to help with her appetite.
Alice - Yay for the good news; hoepe they find a good answer soon for you.
AlyonA - It's good that you're looking out for your mother. As the others said, the stats mean almost nothing on a personal level. You just have to make sure that her doctors are really looking at her as an individual as much as possible. Good luck.
And I'll add my thanks to the ladies who keep this thread going. It is a real help and comfort for all of us.
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Papillon, it is a common thing that the Herceptin has this effect on the heart.......that is one of the major SEs that they watch for. As for taking a break, at this point a month is not going to make any difference at all to her outcome but will give her body a chance to heal enough in order to go forward with more treatment. A lot of times with stage IV there are a lot of stops and starts of treatment due to their harsh effects on the body.
Alice, that is great news Re no mets! Yay! I know more testing is the last thing you want but in reality, it is better getting them done so you know exactly what's going on and what you need to do to combat it, whatever 'it' is. Keeping my fingers crossed for you that all is not as bad as it seems right now.
AlyonA I wouldn't worry too much over your mom not having a MRI/CT. as her doc says her xray is perfectly clear so there is no need to expose her to more radiation right now. If there was a small spot or a shadow on thos X-rays I'm sure more testing would have been ordered. It's really good news that your mom is met free and can now head into her treatment full steam. Hoping she does well.
Rachelvk that's really good news that your shoulder has settled down and is not giving you anymore pain! Here's hoping it stays that way for you.
Love n hugs to all. Chrissy0 -
You just don’t understand the big C, until somebody you love has their life altered - and I know I am all over the place right now…but even three post in to this forum, you people have been a great help. Hugz for all.
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Hi canadagirl
I know the MRI is over at this point but it might make sense to research a facility (for future reference) that does sitting up or standing up open MRIs. I found two different facilities here and my mom had two of these sitting up (on a chair), facing a television. I was allowed to be in the MRI room a few feet away. The MRIs were for spine. It is worth driving a bit far for one of these if a person finds the traditional MRI claustrophobic.
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Thank you Meghar. We don't have the same types of MRI clinics here as they do in the US. Our options are mostly limited to hospitals. Fortunately she did well and didn't need to take any breaks at all. They were great about making sure she was comfortable and gave her ear plugs and a blanket to cozy up with. She said that it didn't really bother her this time, thankfully. Now the wait for the results...
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Chrissy and Barsco
Thank you once again for your words of encouragement and wisdom.
I'm keeping my fingers crossed that I am one of the 7/10 people who don't need any treatment even if I have got sarcoidosis but hopefully not at all.
Alyon, excellent news re your mother's xray. Hope her chemo goes OK. Thank you, too, Alyon, for your comments re sarcoidosis. Yes, it could be a bit of a hairy ride so I'm going to focus on the positive and hope for the best!
Rachel, in case this helps seeing as we have a similar diagnosis and have had similar treatment, it has taken about 18 months to fully get over my mastectomy and I too have had shoulder pain from time to time. It has gone now and I have full use of my arm.
Hoping for the same for you.
Best wishes
Alice
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I am posting this in desperation as I am not sure what to do next. I will try to be brief.
Finished treatment for BC NOV 12- last 3 month check NED. (next check 19th/9)
Bone scan 1 month ago - NED
ABDO and lower pelvic scan - last month NED.
I am currently waiting an operation to remove a large ovarian cyst and an oophrectomy, I have a rectocele also 'Your bowel at the moment, is anatomically in the wrong place' - It is going to be pushed back as my v prolapse. Have had a CA125 test - results not known. But I have stopped being fast tracked for the op.
I am having treatment also related to bladder/bowel incontinence a new pioneering thing (needle in ankle) a 12 week course now finished.
I am also a Coeliac.
The thing is I am having very very bad pain under my left rib for the last 3 months only relieved by standing, it is constant, gnawing and very very uncomfortable. And pain in my back (like indigestion) every day.
The gynae/colo-rectal surgeon said the MRI I recently had is clear. NED, No worries.
I have asked to see my gastro team to see if they can help and I am seeing them in 2 weeks.
I am so down with all these health issues, I have 3 teams involved (breast/gynae/and soon gastro)
I keep thinking it must be mets, I cannot think of another explanation. I don't know what to do
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Hi Wintersocks, wow! Are going through the mill right now or what?! I sure do hope you can get it all sorted soon.
As for that pain under your rib...........with all of your scans etc I notice that none of them go above the waist other than the bone scan but that is the scan that would tell you if you had bone mets anywhere so you can rule them out. That sort of pain in that area can be a whole lot of things including pain from an inflamed stomach and oesophagus or an ulcer. I doubt that you are dealing with mets but its a good thing that you have an appointment with your GE to get that pain checked out.
I know it's really worrying when we can't explain a pain or have one that just won't quit but most times they are caused by other things and not mets.
Hoping things get better for you soon.
Love n hugs. Chrissy0 -
Dear Chrissy,
Thank-you for replying, you are right in that the scans- they are all below the waist. I hadn't thought of that.
I do need just to wait to see the gastro doc and that is on the 16th. I will just have to be a patient patient I guess.
I do feel exhausted with it all. Yes, I think it is a lot too
I hope you are ok, and I appreciate all your help on this thread.
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@Wintersocks - considering your pain, at first I would have said spleen (not bones, and not lungs mind you). But, since your pain is relieved by standing up, my personal opinion is trapped gas in the intestines. Since your diagnosis already includes a anatomically incorrect position of the bowels, and coeliac disease - this is a pretty fair estimate. Lie on your back, take a deep (er…not too deep, mind you) breath, and tap the place that hurts with your open palm. Is there a drum like sound? If yes – it is most likely gas.
Either way – I think you are safe from mets, and that this is NOT an indication of mets. Still, you should do a scan and/or ultrasound of the region. Just to be safe.
I hope I relieved your fears, at least until your doctors help you out. All this info – courtesy of my clinic duty while studying. Seen a lot of similar pains in the ER.
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Hiya, you are amazing! because I have come to the same 2 conclusions having has a lengthy consultation with Dr Google last night. i had alighted on the 2 diagnosis too as the differential dx's. The
Spleen is a common site for probs in Coeliac disease, and the gas issue......well it is a prob!
I am going to try the the above 'experiment' - when things are quieter today.
I will pm you, so as not to hijack this thread.
I think i am a bit calmer about the mets issue, but it is an ever present spectre now.
I really appreciate that you have taken the time to reply.
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Dr. Google is kind of…out there. A lot of ‘options’ – some of them pretty scary when you have no idea what symptoms and ideas to rule out.
So! Yes, the spleen is a hotspot for coliac, since it is an autoimmune disease. The spleen is the center of your immune system, and all.
But! Spleen pain is a different kind of pain (if you explained the location, type of pain, etc… correctly), more along the lines of spreading discomfort with a central spot. Unless it is ruptured…and you would know if it was. And would be…err…deceased…yesterday. So, it’s not.
(har, har…ignore my bad humor)
Sadly, I am unable to palpate you (and your spleen) and see for sings of splenomegaly, but if your abdomen is not swollen and/or hard, that should also not be the case. Coeliac makes the bowels spasm and move, thus making trapped gas pretty regular. With gas there could be bloating, but the stomach wall is not hard, and you just feel…full.
The bottom line is – it doesn’t sound like rib pain aka bone pain, or lung pain. The only concern could be the spleen (since it is part of the lymphatic system and I see that nodes in the axilla were involved with your initial dx), but you would probably have other places responding if it was a spleen related problem. Or in other words – a lot of your lymph nodes would be going crazy.
Still, your gastroenterologist will do an ultrasound (make him/her check the liver and spleen along with the larger intestine) and you will have a clearer picture of it all!
Ok…keeping quiet now. PM me if you need anything, or feel that you are still unsure about…anything? Heh.
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Thanks barsco and Chrissy. Your replies mean a lot. Xx
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My question is for anyone who has been on Abraxane. Do all Abraxane patients lose their hair?
And is anyone out there on CPT-11? Same question. Do all CPT-11 patients lose their hair?
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Hi Tectonicshift, with both Abraxane and CPT-11 hair loss is one of the most common SE listed on the drug information.
I have not used either drug but from what I have read on these threads it seems that most who have used them have lost their hair.
Love n hugs. Chrissy0 -
Just a quick question for all the wonderful ladies! My tumor markers went from 44 To 54! I had a bone scan last January and everything was fine! At that time my CA-27-29 was 67, my CEA is totally normal!! My right leg has hurt for years. I also had shingles before my last tumor marker test in July!! Why the erratic number changes??? Thanks everyone!!! Kathy
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Kindergarten tumor markers can be a wonderful tool for some and do nothing for others due to their inaccuracy. The numbers can fluctuate a lot depending on what is going on in your body and not necessarily due to cancer. They can be sensitive to inflammation as well and if you had shingles just prior to your last test I would say the rise would be due to the inflammation caused by that particularly as your scans and other tests came back all normal.
Hope this helps.
Love n hugs. Chrissy0 -
Thanks, Chrissy. I'm on both of those two chemos now and my hair is growing back. (After different chemo during which it fell out.) So I'm a little bit worried that the chemo isn't working on me, since my hair is growing in, not falling out.
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Thank you so much Chrissy!!
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