If you are not Stage IV but have questions, you may post here
Comments
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Purple
I have no advise on disability but just wanted to offer my support.
My DH has stage 4 colon cancer as well. He was dx two months after I was last year.
I hope they can get your DH mets and the pain under control and he is NED again soon.
Big gentle hugs to you.
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Sorry to hear that, purple... he did have a good long run at stage 4 without progression. contact social security/disability, or i know now in california, that you are able to file on line. hugs for you both, and good luck to you both too.
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Hi! I had posted here before I just wanted to chime in and thank Chrissyb for all of your responses and help the last few months. I got my biopsy results back and unfortunately I am now stage 4 cancer which has spread to my liver and lymph nodes. I was on Tamoxifen which didn't work for me so I will be on Xeloda anyway I will probably eventually post to the Stage 4 forum but wanted to thank you before I do.
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KarenSusan, I'm so sorry to welcome you to the stage IV threads but welcome you I do. I know you will find loads of love and support in these forums.
I know quite a few girls on Xeloda and it is doing great things for them so hopefully it will have you visiting with NED in no time at all.
I know right now you are still dealing with the fact that you are stage IV and it does take a while to get your head around but you will also realize in a while that you can still live a full life while living with stage IV cancer.
Love n hugs to you. Chrissy
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Many thanks to all of you strong and wonderful ladies for your compassion.
And btw, xeloda did the trick for my husband 5 yrs ago. He worked 7 days a week with colon cancer, carrying his chemo pack PLUS an ileostomy
( reversed after 9 mos) Xeloda was kind to him!
I get my strength from the BC forum.0 -
darkest
This is not BC ( husband -colon cancer) but xeloda was fairly gentle with him 5 yrs ago.
No vomiting at all, he did get a little 'purple feet' side effect and he had the runs , but we used immodium and powerade zero ( gartodae has too much sugar) to keep that under control and replace his electrolyes with no hospitalizartions.
This was aftermos of 5 F U infusion.
We liked the fact that we could ' control' the xeloda. For example, he was a music teacher and church organist. We took him off all through DEC ( DR permission) so he could play all the music with no SEs and really enjoy Christmas.
He was taking 5 pills a day.
Good Luck to you!
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Purple,
Colon cancer doesn't seem to be on the Compassionate Allowance list, but you can call or check the we site for more info http://www.ssa.gov/compassionateallowances/
You do need to get your paperwork in promptly but your first Social Security
disability benefits will be paid for the sixth full month after
the date your disability began or when you stopped working, whichever is later. If it takes a while to get everything sorted out and approved, your payments will be backdated to that month. If he does qualify for compassionate allowance the process is really quick, generally less than one month, but otherwise it can drag on and you might want to consult a disability lawyer.0 -
I am hoping someone will have some input for me on Abraxane please. It doesn't appear to be used that often and I see more people in the Stage IV forums that have it listed. My husband is the one with BC. He was scheduled to begin weekly Taxol in May but that was delayed d/t he developed a infection on his aortic valve and at that time all chemo had to stop to treat it with 6 weeks of abx. Now we are moving toward restarting chemo but our MO (who is just the best) plans to use Abraxane instead and had it approved by our insurance and everything. I understand it is related to Taxol but he says the SE's are less plus he won't have to use all the steroids which will be safer. Anyone who has personal experience with Abraxane and could share some tips, things for me to help him, watch for, etc, I would be truly grateful. I am doing my best to help him get through this. Thanks.
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Hi oddducklady, I've never used Abraxane but I did do a search and there are many who have and are using it. Perhaps if you do a search yourself you may be able to find more information.
Good luck!
Love n hugs. Chrissy
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Hi, all. I had written a couple of pages back about random leg pains when legs at rest and whether they could be signs of mets. I saw the best of my two oncologists today (I see this one in Seattle so I can get Zometa), and she is not concerned about it. I also see her for tumor markers, which I can't get back at home either, and one was processed immediately and normal, and the other will be back tomorrow.
I cannot say enough good about the care at Seattle Cancer Care Alliance. I think I've talked my husband's ear off about it today. It is a fantastic place, if we have to be in such a place to begin with.
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Mary, being happy with your cancer care team is half the battle with this disease so I'm very happy that you are happy. Random leg pain can be a SE from the Femara but it's always good to check.
Glad all is well so far!
Love n hugs. Chrissy
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oddlucklady, Abraxane is basically Taxol, but the molecules are bound to albumin. In theory it makes it easier for the body to "digest" [you might say]. It's supposed to bind more often to the cancer cells and less often to regular cells. In theory.The side-effects should be in the same family as Taxol, although of course it varies from person to person. Data suggest that the side-effects will be fewer, but once again it varies from person to person.
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Hi Chrissy! Thank you for starting this thread. I was dx'd with DCIS (9.3 cm) and had a lumpectomy. Pathology showed 3 areas of IDC each less than 0.1 cm. I then had a mx and SN biopsy 0/1. Pathology showed an undetected area of DCIS (1.4 cm) removed with clear but small margins (<0.1cm). No rads and no chemo due to no LN involvement and small IDC. I am tripple negative and grade 3 on all. I can't help but worry that my cancer will return somewhere else because I had no other treatment other than surgery. Can you weigh in on this?
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Nancy, it is so worrying to be dx with cancer and even more worrying when after surgery they say you need no more treatment. Your mind sort of screams 'why not?'. I know your docs probably explained why they felt there was no need for anything further because you had a mastectomy but I think I would like to talk to an onc and find out just what their reasoning for this decision was. I would also question the narrow margin on one section of DCIS and why rads were not required.
To give you some reassurance, my SIL was dx with cancer in both breasts thirty three years ago, she had a double mastectomy with nodal removal no further treatment. She is still healthy (other than aging) with no further problem with BC.
It is possible to live the rest of your life without BC returning but in order to start that living you really need to have peace of mind and I think a good conversation with your docs will help to give you that.
Love n hugs. Chrissy
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Thank you, Chrissy! After my mx I met with a radiation oncologist and medical oncologist who were both in agreement that the risks of rads to treat the newly founnd DCIS outweighed the benefits. I had a permanent implant during my mx which was another reason they didn't want to do rads. Since I am TN no Tamox either. They said that they would just watch me. I go for mammos and ultrasounds every 6 mos.
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Nancy, I understand a little more of their reasoning now that you mention your permanent implant........rads would more than likely damage the implant and the benefit would not as they say outweigh the risks. Monitoring you on a 6 monthly basis is good so I would be quite happy with that and start to try to return to my normal life........just enjoy it more.
Happy to weigh in any time you have a question or query or even if you just need a little reassurance........I'm always around.
Love n hugs. Chrissy
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Thank you once again, Chrissy. I feel that they are on top of my follow-up care but it's never bad to question and reevaluate. I find great comfort in your opinion(s).
Nancy :0)
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Many thanks for the replies, ladies and now a new question regarding PAIN.
My husband has inoperable stage 4 ( colon cancer recurrence) tumor on his hip. The front is pressing in the sciatic nerve. The posterior region is growing into the muscle. He is in constant pain...sometimes AGONIZING. I cannot stand to see this.
He is on 15 mg morphine 2x day and oxycodone 5 mg as needed which he uses every hr or so , a steroid ( dexa ???) 2x day and soon will have to cut his NSAIDS completely when chemo .Can any of you suggest something ' better' for pain mgmngt ? I will talk to the DR soon as he is having his port done this MON and then will start folfox chemo ( 5 FU , avastin and some other nasty warrior oxiplatin <sp>)
He said the morphine is not touching the pain at all.
Are any of you taking it ? Woyld you say his is av ery low dose or ?
ANY suggestions at all are much appreciated.Many Thanks
Laurie
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Hi Laurie, so sorry to hear your DH is in so much pain and pain when you have cancer is not good. Nerve pain from the sciatic needs to be addressed........something like lyrica? or gabapentin? is a possibility but you need to get him to a pain management doc asap as he/she is the one that is going to do good things for him now.
I know all these docs are a bit of mess with your head but the pain doc is to go to person for this amount of pain.........he/she will get your DH comfortable if not pain free and being pain free will certainly help with the rest of what he is dealing.
Hope this helps a bit.
Love n hugs. Chrissy
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So sorry about your DH's cancer and pain, Laurie. I totally agree with Chrissy on the pain mgmt doc, but also wanted to add that I think Dilaudid is several times stronger than Morphine, so you might want to ask about that one. (((Hugs))) and prayers for your hubby. Deanna
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THX very much to both of you. I do appreciate it.
I was actually thinking gabapentin, but didnt like the SEs' ( HA! He's prone to so many now anyhow..... ) and will also look into the dilaudid. For now, I will go thru the onc doc and as long as he can mange it, that would be great. IF NOT, I will ask for areferral out. Sure wont want to ruffle feathers.
The pain has been there a long time but fairly easily managed. The past week has become incredibly intense... not sure ehy, but it needs to be addressed asap.
Thanks once again!
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I'm sorry he is in pain. Please get to doc ASAP...I am NOT a doctor, but I think what he is taking is low dose. I take OxyContin 40 mg a day plus 10 mg of oxycodone 3 x's a day or as needed.
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I agree, that is a very low dose. almost nothing at all. Dilaudid and morphine are both lab created derivatives of the poppy from whence heroin is derived, and both good for extreme cancer pain, i do think the palliative/pain doc should be consulted. with less pain, he can be more present, and there is no reason to suffer. I hope you do get some help with that ,purple, bless you...
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Just wanted to say I've been on Gabepentin for several years now for nerve pain (floating disc) and it has not gave me a single s/e.0 -
i don't think i have any side effects from it either, it really does seem to help with nerve damage in my feet, and in my axilla and what remains of my breast. when i don't take it, i don't seem to feel much different, but the pain in my feet intensifies, and the pain and deep itchiness in breast and arm is more apparent also. my man tells me to keep my hands off myself! i am surreptisciously (?) squeezing and pressing, cause the compression feels better!
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THX so much , ladies ! You are all so very caring.
I will call dr tomorrow about upping dosage and possibly adding gabapentin.
Al my best to you,
Laurie
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purple, I also take gabapentin and have been for years -- to help me sleep, actually. So it can make you drowsy but if you take it at night, not a problem I don't think.
I have a question that I cannot seem to remember to ask MO when I see him -- it relates to the question on the prior page about stage I and scans. I assume that the women who were early stage, have treatment, and then end up with mets a short time later probably already had some spread of the cancer but at a level that was undetectable, or went undetected. If this is true, it seems to me that having a scan before starting treatment is a good idea. If it's all clear but you do chemo etc anyway, seems like there wouldn't be a need to do another scan pfc, absent concerning symptoms. Based on this logic, I wish I had lobbied for and gotten a pet scan or something before starting chemo.
Anyway, was wondering if this line of thought has any merit to it.
Nancy, my mother had bc and a radical bmx and ald in 1970 or thereabouts. She is still around and the cancer never came back. I am hoping to follow in her footsteps in that regard, though I don't know that her cancer was like mine since there is so much they didn't know in those days. I don't have the brca gene.
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Cypher:
I think it just depends on your onc. Five years ago when I was diagnosed Stage 1, no nodes BC, my onc insisted that I have full body bone scan, and full body CT (originally ordered a PET but my insurance refused it so had the CT instead). My BS had already done the breast MRI after my biopsy and prior to my surgery. I know for a fact that she still adheres to that policy today, 5 years later, for the same reason you state in your post. She feels that even early cancer can have something else hidden and lurking so does these extra tests prior to chemo as a further "look see," and yet I know others I have met along the way with the same stats that had no further testing prior to chemo. I know it guarantees a big fat nothing in the grand scheme of things, but the extra peace of mind (is there such a thing with BC?) helped an already horrible situation. It sure would be helpful to all of us if all the oncs were on the same page in regard to further testing prior to treatment. Sigh.
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Cypher here in Australia it is standard practice as part of the original staging that bone scans, chest xrays and full body CT's are done as a matter of course once the cancer has been confirmed by biopsy. The idea of that is to make sure it hasn't gone anywhere else before a treatment plan is done. It also gives the doc a base line for comparison for future scans.
Don't beat yourself up for not insisting on having further scans to begin with as it will not change where you are right now, it will only give you angst and increase your stress level and we all know stress is not good for us.
Love n hugs. Chrissy
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I like the way they do things in australia! The only thing that kind of weirds me out, is that it is rare here on bco for me to see another woman who has as many nodes positive as me. and many stage four, that didn't have any positive nodes, or not very many!
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