If you are not Stage IV but have questions, you may post here
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Thanks everyone for your imput
I talked to oncologist on phone yesterday. Previously messages were being relayed back and forth through nurse. He actually does not think I need a scan. He will recheck labs next visit in two months. In mean time, I'm going to change my blood pressure medication. The blood pressure med I take currently can cause some of the changes noted in the lab work. If its mets, the numbers will increase. I am asymptomatic right now. Plus, I am taking treatment as I'm on femera. I appreciate everyones imput.
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Hi Vickilind, I'm so sorry that your Aunt is stage IV with Colon and Kidney cancer and I'm also very sorry that your cousin seems to be in denial about it. No one likes to think that they are going to lose some one they dearly love.........it is just too hard to get your head around. It is a shame that your Aunt has gone from a very active person to one confined to a wheelchair but that alone should give him a pointer as to what is happening.
As for asking before hugging her, I wouldn't worry about that but I would hug her very gently and say something like ‘if this is too much for you please, just tell me'. Keep it brief and gentle. You will more than likely get an answer that any hug is a good thing.
As for broaching the subject of your Aunts stage IV with your cousin, just take your cues from him. He may avoid the subject all together and even if he does and you don't get a chance to have a deep and meaningful with him, you can just let him know that you are available should he want to talk about anything or have any questions about anything.
Gentle ((((((hugs)))))) to you.
......................................................................................................Hi Elizabeth, I'm really sorry that you are facing this dilemma but in all truthfulness it is much better to know if there is a problem rather than not. By having the bone scan you will know yes, but if you don't have the scan and just wait for symptoms, you may be waiting until there really is no hope and no time left either as quite often symptoms don't show up until it really is too late.
I know that sounds harsh but truly it is reality. You may improve your longevity just because you are treating the problem and slowing down the progression and that is the aim of all of us.
I truly hope that you decide to go ahead and have the scan. Good luck with what ever you choose.
Love n hugs to both of you. Chrissy
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Elizabeth, I have just read your last post. You must have posted while I was typing.....lol. That is really good that you spoke to your onc and have decided on a plan of action. Hope it works well for you.
Love n hugs. Chrissy
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I got my CT results yesterday. Neck mass is NOT on the bone so no bone mets. YEAH!! It is however on my Thyroid so I have a biopsy next Friday.
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A question to you seasoned Stage IV peoples about bone mets!
My first chemo failed (viable cells in lympnodes after chemo) so my onc put me on Navelbine and Xeloda. I have had pretty bad left hip pain (not in my joint) since end of February - began as intermittent and mainly at night, gradually becoming pretty constant (sometimes both hips). I have told my onc this several times and he kind of ignored it until last visit when I told him that I was pain free for 4 days after my second cycle of Navel/Xloda (from days 9-12) - he said "well lets see what happens next time". So this cycle I have been pain free for 6 days (days 9 - 16 which is today) although I am starting to get a little twinge in my hip tonight. Anybody else get this effect?
So my two main questions - if the pain in my hip has gone in line with the chemo cycles this suggests the drugs are working BUT this also really means there was something there for them to work on....right? I feel silly to be jumping to bone mets.... It seems so paranoid because I haven't even finished initital treatment (even though I began last October), but treatment has not gone so well and the staging isn't so good. Should I insist to my onc that I get a scan of my hip?
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Hi Sian. Not sure that either (or none!), of your conclusions are correct. There can be many reasons for pain-it's normal tpo assume that the pain will be related in some way to the cancer. I think your onc's suggestion of "wait and see" would probably be ok. You're being treated at the moment, so not sure if he would add anything to the mix, even if a scan did confirm bone mets. I would be tempted to leave it until you have completed this course of therapy. But if it will prey on your mind for the next few months, then perhaps requesting a scan would be the better option-for your emotonal/mental wellbeing at least. Good luck.
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Thanks Elaine - you have written just what I am thinking. I think I just have to try to calm down and keep trusting my onc - he really is very good.
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Chrissy,
Thank you for the help and guidance. I am looking forward to seeing her, spending the afternoon with her and the family.
All my best to you and your Stage IV sisters; blessings. And thank you, again.
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Sian65, I would like to know what a bone scan said if I were you. Being paranoid is a normal thing for us! What kind of scans have you had?
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It does indeed ,make us paranoid. maa. One of the best things we can do for ourselves is therefore to keep scanning to a mininum.This can reduce the levels of anxiety enormously-there's a fine line to be drawn between scanning regularly and when new symptoms appear. But as in Sian's case, she is already having treatment, so little would change regardless.
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I just finished reading this thread. Thank you to everyone that has contributed. I wake up each morning looking for something to make my tail wag, even though I feel deep down that this disease is somewhere planning it's next attack on me. I guess I found out how much of a numbers gal I really am after I got knocked off my chair reading my path report. I know there's a good chance We nailed it, but for me, there's just as good a chance that we didn't. I live a healthy lifestyle, while still enjoying myself. I refuse to beat myself up about enjoying this life.......as long or short as it may be. I have fears too.....that my 8 year old son will have to grow up without me......that I won't get to be there when my 20 year old daughter gets married, or has my first grand baby......even, hating the thought of my husband getting close to some other woman after I'm gone. But, enjoying myself and my family is a win win in my book. If I'm around for all that stuff it will be something better than I can describe here with my words. If I'm not here, my family will have some really wonderful memories of our time together instead of remembering how mom was turned inward with fear. Let's not lie to ourselves about the anxiety that we feel and how it affects our loved ones. I, for one am trying to turn all that energy to more positive places, while I still can!
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Hi ma111 & Elaine... thanks so much for taking the time to reply. I had all the scans when I was first diagnosed back in September last year. I've been in treatment since then with no other investigations other than pathology from the mastectomy.
The hip pain came back yesterday after about 10 days of being pain free. I am guess I am worried that if it is an undiagnosed bone met I only have one more cycle of chemo to go before I switch to radiation. So I might then develop resistence to Navelbine and/or Xeloda because of "incomplete" treatment. I have already failed with Taxotere and Epirubicine and I don't want to add Navelbine and Xeloda to the list!
I guess I am paranoid because my story over the past year has just been as series of worse and worse news... I began as StageIIA but I kept getting upgraded to now be IIIC. I am worried because they found lots of viable cells in the lymphnodes after 6 rounds of neoadjuvant chemo... that was found Feb 16th.. I didn't begin chemo again until end of March and still have not had any radiation. So I have had viable cancer in me for a long, long time - at least 13 months (my breast mass first appeared in April 2011 but I was in Pakistan then and chose to get back to Sweden before acting .- a 5 month delay that I hope I don't regret).
I think I shall talk to my onc about the drug reistence worry and just see what he says - and keeping reminding myself that I really do trust him and he knows a million times more about this than I ever will :-)
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Hi all
I am looking for some suggestions to help my friend (who has Stage 4) and her family.
Yesterday at church she needed to talk, often will chat with me as she feels I understand. Firstly her cancer has spread everywhere and she has stopped the latest chemo.The time frame is months. However she actually has few symptoms other than tiredness. She had hoped for a few days by herself while her DH was away at a conference but because she went out by herself the other day and he could not contact her( he was ringing home, not the cell phone!!!) he has decided that he can't go because if something happens he couldn't forgive himself. Hospice have explained that something happening suddenly is not what will happen. They are both mid 60s and he has recently retired. Another friend and I have 'kidnapped' her before and taken her out for the day but still there were several phone calls. I know he is worried but she still needs some space as there are things she is trying to get done while she is able.
Any ideas. I was going to PM a few friends on here but decided that this could be a common situation and it might help others.
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Chrissy,
Thank you for the great advice. Had such a great visit with my aunt. All three of my cousins were there and most of their kids came in also. My aunt looked much better than I had anticipated, except she was on the couch the whole time. She is pretty accepting of her fate and even made sure to encourge me (!) in my battle while telling me she is okay. She said she has had a great life and explained it isn't worth it (for her) to try and go through surgery and/or chemo. So, she gets roxinol PRN and is just enjoying her time.
My cousin (the one guy) has come around and accepted the truth that his mom is not long for this world. He seems okay with it. Well, as okay as you can be.
Anyway, I wanted to thank you again, all of you, for your advice. Hope you have a great weekend and NED becomes your good, close friend.
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Alyson, I am not stage IV, but I have a worrier husband and can sympathize with what your friend is going through with the phone calls etc. Given the time frame, I really think it would be worth it to nominate one of you, whoever knows him best, to tell him to lay off. There must be a way to tell him nicely and it might help.
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Alyson - the phone calls from friends hubby bother you - but do they bother her?
Personally, I would NOT tell hubby to back off. He is feeling protective, and under the circumstances, that sounds understandable. You mentioned a cell phone. Does hubby have one? Maybe if you have her away for the day, you could just text him every few hours to let him know she is OK - having fun - resting for a bit before heading home etc.0 -
I have a friend with a worrier husband... We did exactly that with the text messages, but I also made sure I stopped in for a chat while it was just him at home.
She's not dealing with cancer but another very serious illness that has caused her bones to degenerate so badly she broke a hip bending over to get a sweater out of a drawer. She was 36 at the time.
In the past I sat him down, and we discussed what an awesome husband he is, and how much he is there for her... And that I'd like to be able to take his mind off worrying for a bit. To give him a time out. We arranged things so we'd touch base every 2 hours. From there he has since gotten a lot less worried when she is out with me specifically. We've even gone away for a girls weekend with pre-arranged phone call times, etc.
Maybe that is the better approach to take.
Heck my hubby was beside himself to be away after my one minor surgery so he and I agreed I needed to have one of the girls sleep over. We just chilled out and did girl time. I am not sure if that is an option for your friend but it could work from his point of view.
As for him going or not going on his trip. If a solution can be come up with it needs to be expressed that it would hurt her to know he's not taking the trip and she'd feel guilty. It's usually a good stance to take.
Hugs and loving thoughts to you all.
Shell
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Thanks for the replies. Learin it's my friend that is bothered by the calls. She feels trapped as before the cancer she was a very independant business woman who travelled by herself as did her DH.
My DH who has been absolutely wonderful on my BC journey thinks he might have a word with him. I am going to speak to the daughter this morning. I know he is scared.
Must get moving as I have a playgroup to set up.
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Kayb, loosing your balance does indeed need to be told to your onc. It may me due to meds but there are also a whole lot of others thing it can be. It's always a good plan to let the docs know if something unusual happens to us as we just never know.
Hope you get a good answer when you see your onc.
Aly, so glad you got some ideas.
Love n hugs. Chrissy
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Kayb ~ Severe vertigo was actually what made me go get the lump in my breast checked out in the first place. I had been ignoring it (believing it was yet another pesky, but benign cyst), until the vertigo (4 straight months of it) made me feel really crummy and pushed me to do an overall physical. Once I was diagnosed, I was scared to death that the vertigo meant brain involvement, but it didn't for me. My brain MRI came out normal and the vertigo left the moment I had my tumor removed. None of my team can explain it, but that's what happened.
I have had intermittent mild dizziness throughout chemo and even with rads, but I am also fairly anemic, so that is what I think it is now. My advice is to get it checked out. If it is nothing, you will feel better. If it needs to be addressed, it's better to face it than ignore it. Please keep us posted.
Blessings,
SAN
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Scian 65, Sometimes trusting our doctors is all we can do and I think they do what they can do. We do have to remember that they are not the miracle workers that we or them want to be.
Alyson, Tell her husband the truth. She just wants to get some stuff done when he is not around. I'm guessing it is funeral arrangements or along that line that would totally freak him out but that she wants to do. Actually my own funeral arrangements was one of the first things I did because I did not want too much money spent on it. This is a hard situation as you don't want to hurt a loving husband's feelings. Try convincing him and re telling that she loves him and that hospice said it will not be all of a sudden. Remind him he did not call the cell phone or he would have reached her.
Kayb, Tell your family doctor. It might be as simple as a sinus infection. If not, July is pretty far away.
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Im so confused with all of the numbers and stages. How do they come up with that? I never like to refer to it using the numbers. I was dx as 3a, but see some stage IV had smaller tumors and less positive nodes. Does it also have to deal with clean margins and such?
I also cant get my onc to do a PET scan and I cant wrap myself around that. I dont understand why we would wait to have symptoms if there is something minor that could be treated earlier to prevent spread.
When I went into surgery, I was told nothing about nodes and just the mast. was to be done. Then find out that 8/20 nodes full of cancer.
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Cindi, Breast cancer is very confusing. There are many different subtypes then the staging.
http://www.cancer.gov/cancertopics/types/breast this is where I learned a lot including how staging is done and what it means. Do remember that you are not a statical number! I also do not understand why your oncologist is not doing a PET with you being a stage III. You can always get a second opinion.
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Thank you ma111, I am in the process of getting the 2nd opinion (3rd). I did get one last month but I am with Dean and all of the oncs in our area for Dean work in the same office. I don't know how much of a 2nd opinion I received due to that.
I contacted my ins. comp. and to go out of network would cost me a small fee compared to getting some positive support and concrete answers.
Thanks again
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Kayb ~ That was our thought exactly! I woke up the day before Easter (last year) with what became debilitating vertigo. It affected my work and every aspect of my life. I went to a very highly respected ENT in San Diego about 2 weeks after it started. After doing a battery of tests, he ruled out inner ear issues. He had a very concerned look on his face when he told me he wanted me to get a brain MRI due to the reaction of my eyes to one of the tests. He thought it could indicate a brain tumor.
This freaked me out because my 19 year old daughter had a brain tumor at 7 yrs old that resulted in a scary brain surgery that almost took her life, but she fought hard. (She's grown up and perfectly healthy now ~ thank God
I avoided the MRI due to cost and plain old avoidance, on my part. I finally found a chiropractor that brought me some relief and we determined it was probably a pinched nerve in my neck.Fast-forward 4 months and I stood in a Radiologist's office looking at my mammogram and ultrasound results. He said he would compare my previous films, but that he thought it was nothing. I actually got a letter from them saying they believed my tumor to be benign and to come back in 6 months. If not for feeling so bad physically from the vertigo...I might have ignored the tumor longer. When I finally got my breast cancer diagnosis, my mind went immediately to the worst possible scenario. I share this with you because I want you to be encouraged that symptoms are not always what they seem, but persistent symptoms should always be checked out.
When I finally shared my vertigo issues with my medical team, I was in a brain MRI the next day. As I mentioned in my previous post...it was totally normal. When my BC tumor was removed, I woke up perfectly clear headed and have never suffered with it since. I recently shared that with the general surgeon who did my MX and she called it a miracle. Whatever it might have been. I choose to give God the thanks. That vertigo might have actually saved my life.
SAN
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Cindi - I have never had a PET scan, but I know my onc does use them. It depends a lot on the type of breast cancer you have and where it's likely to travel to and which scans pick up those areas best. That's how a different onc explained it to me. I've only ever had CT scans and bone scans. Good luck!
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Cindi, Sometimes a small fee is worth it. if the other oncologist worked for the same then he followed the same rules.
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Just chiming in here as I start to negotiate the post-chemo part of my life. I'm just wondering how you decide when to call your MO about something that concerns you. In my case, I've had a real bad cough just under 2 weeks. There is some nasal congestion (more than the chemo-induced kind), but I can't stop wondering if there's something else at work. I'm TN and my original tumor grew like wildfire between finding it and surgery, so I do get nervous. But I don't want to be too paranoid. I do have a call in to my MO just in case.
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Rachel,
I think the first step should always be your PCP (of course I say this but don't practice it - I always call my MO). You know your own body and what is "normal" and "abnormal". You should never worry about calling either your PCP or MO as that's their job.
That being said, I think the "magic" number is two weeks constant (pain, cough, etc) or if it worsens you might want to call sooner for relief.
With nasal congestion I would think more allergy/cold related.
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Rachel a good rule of thumb to live by is if the problem is a real problem, unusual as in something that is new to you and lasts more than two weeks continuously then it's time to let your doc know and go from there.
Hope this heps.
Love n hugs. Chrissy
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