searching for answers to metastatic breast cancer
Hello everybody, my name is fouzia 46 yrs old. In 2003 oct (breast cancer awareness week!!!!) I was diagnosed with 3rd stage breast cancer in my left breast. Within a week I had a mastectomy, chemo for 9 sittings and radiation for 25 days. Other than the normal side effects of fatigue and nausea I was ok and within a few months I was fine and back to my normal life. I was doing catering from home which I loved doing and was reasonably successful, occupied and happy. I had a major personal problem as my husband for 26 yrs left me as soon as I finished my radiation as he couldn’t cope with the stress. But I had wonderful parents and 2 sisters and lovely 2 children who stood by me like a rock and took care of me like a baby. My daughter got married in2005 and my son joined college the same year and everything seemed fine. Out of the blue in September 2006 I had pain in my neck which was diagnosed as metasis in the bone. I had corpectomy done to stabilize my cervical spine and went through the whole radiation and chemo again. while doing the treatment they found some spots in my lower back also which was also hit by radiation. I was fine for the past 2 months. Last week I got a headache and slight slurring of speech and when an MRI was done they told me that there were some changes in the brain and I need to do a Lumbar puncture for meningitis and if necessary some injections in the spine. It just seem never ending I am tired of treatment and the cost of it as in India we don’t have medical insurance. But I don’t want to give up as I feel my kids still need me and I want to live for some more time to see my son settle in life and daughter start a family. I don’t know what to do.. I thought of stopping treatment but I don’t know if I am ready to give up. Please help
Comments
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Hi fouzia guess we all feel like you do ..its never ending ....But then u are only young and each yr that u make you are closer to a new med for this illness...there is only so much we can take..But then u do have goals to work towards...one grandchildren and and seeing both your daughter and son on there life path...
You say u have thought of stopping treatment ,but then say u dont know if u are ready to give up? I would suggest that your not ready to give up ...so give it another try ..you have so much to gain..yes its all a pain..but you can do it...
Know we are all here to offer help and support...
hugs
Oz
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Thanks a lot . Its great to be able to talk to people who understand what I am going through. Can u believe i had booked tickets to go to singapore on november 3rd to spend some time with my daughter living there. my son has semester hols for one month and we were planning to go spend it with her. we have been chatting everyday , she was so excited about it and had planned all the places she was going to take us. she just moved to singapore with her husband last dec and she wanted me to help her set up her house and learn some cooking tips. But when I told her about the test results she told me "its ok ma, you finish your treatment first, you can always come afterwards." My son is also insisting that i fight it out and so is the rest of my family. So i think i will go ahead and do the treatment. thanks once again for your encouragement.
fouzi
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Absolutely!!! You are so young and your kids will be pulling for you every step of the way. Men often can't cope, some leave and some take refuge in other vices...But you are stronger than that. There are so many good treatments out there and many will work for you. Keep a positive attitude that this too shall pass. I am now stage IV but doing well. I wake up every day with anticipation of what I can do with it. If you need antidepressants, get them. It will help you keep your chin up. You are a special person and you deserve better, but take what you have and make it the best you can. (((Hugs)))
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Fouzia, please keep up the fight. Believe me, I know it's always something going on and sometimes we all get tired of everything we have to go through. You are not done yet. Your children still need you and want you around.
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Thank you all soo much. I know I have to fight for my kids. They love me and depend on me too. My daughter is a clinical psychologist but she needs to talk to me everyday about her life and work, and my son is just getting used to hostel life and still misses me. I know we will never be able to let go of the kids but I want to live for some more time, till they are more stable. THey have had to go through a lot of wierd stuff in thier young lives what with thier extremly healthy mother falling sick all of a sudden and thier father walking out of thier lives. Was in a lot of pain yesterday but feeling better today.Please pray for me, I believe its the prayers of so many people around me which has helped me fight for so long.
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Hi Fouzia. Hang in there and stay strong
My thoughts are with you. -
Your husband is a bit of a coward but you are not... Try to stay strong and see if the available treatments can help you. You have the love of your family and that is so important. I hope things look up for you soon and that you can go see your daughter in Singapore!
Robin
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Fouzia,
We are all here for you. Good luck with your upcoming treatments. Live is worth living, and your kids are right, fight this thing all the way.
Big hugs to you....Joni
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HI guys, Got my lumbar puncture test and it was negative. I dont have any pain as of now but the doc wants me to the do the treatment anyway as i had the symptoms and my mri had shown some changes. He feels that either the cells are so minimal or the test didnt pick it up but definitely some signs in the MRI. So Insha Allah i will start chemo again from Monday for one month. I don't know wether to feel relieved that the test was negative or upset that i have to do chemo. Anyway I am taking it as it comes. Will keep keep in touch. Thanks for the support. I am amazed at the kindness of random people all over the world praying for me. I believe it is prayers that have worked more than my treatment so thanks once again for praying for me
fouzi
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Fouzi yeahhhhhhhh to the neg results of the lumbar test thats good news...But I am unsure why your Onc would want u to do chemo just in case??? this is kinda strange to me....I would be asking heaps of questions before I did chemo...why cant he put u onto an AI ? thats the easy way to go...Please can u go and get another opinion? before u try more chemo? or is he just going to give u a chemo tablet called exolda?
The picture that u have here which is u? its so nice ..
hugs
Oz
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Hi Fouzia,
Just wanted to say hi. I too live in Mumbai. I agree that the treatment costs here are prohibitive. But keep your chin up , there are many options nowdays.
Hope you are doing better. By the way, I think that the support that your are getting from your kids is great
love n luck
Shafali
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Dear Ozzie. thanks for your support. I had my chemo on monday and back home yest. Feeling better now, Yes i did consult my cousin and best friend who is a doctor in UK and has been my side every inch of my treatment. I sent him my MRI scans and he consulted with the ocnologist in his hospital and gave the treatment method.
This is my discharge summary.Looks very scary but I by the grace of God I have withstood the absue so far. The rest is in Gods hands.
"
A known case of carcinoma of left breast, had mastectomy followed by chemotherapy with AC and Docetaxel and radiation to chest wall in 2003. now in September 2006 patient has come with neck pain and radiating pain in the right hand. On investigation patient was found to have cervical and lumbar skeletal metastasis with cervical paraspinal mass. Patient had corpectomy with anterior stabilization with plating on 4/9/2006. Post operative patent had local radiotherapy to cervical region to c5-c6 and lumber L1 to S2. Subsequently patient was started with 6 courses of chemotherapy. Following witch the patient was on bidurate and faslodex. Now patient has come with headache with vomiting. Patient was seen by neurologist as op patient and found to have XII nerve palsy on left side. MRI of brain showed meningal infiltration. Since patient had already radiation to cervical spin the choice of treatment of intrathical chemotherapy vs WBRT bas been discussed. And it was decided to try inrathical chemotherapy. now patient admitted for the same. Had second course of Methotrixate 12mg."
Yes that is the picture of my family. Me with my daughter, son-in-law and son for her wedding. They are the reason I am alive. God bless them.
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Hi Fouzia sounds to me that u have great support with your cousin in the uk? thats so handy ..I was so worried about u having chemo , when there are other options...but I didnt know re the brain. keeping the fingers crossed that this works...know that u are in my prayers and thoughts along with all the people on this site, I pray for us all every night...
your family is lovely ...thanks for sharing with us.. hang tight...
hugs
oz
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Dear Ozzie,
what other options do we have other than chemo and radiation. I was already on hormone treatment(faslodex) which i have stopped to do this chemo. Let me know if there is anything else. So far the sideffects of chemo are ok, of course I am on steroids so that helps. How are you doing? Hope everthing is fine with you. You are in my prayers
fouzi
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Dear Fouzia,
Having read the board, your case sounds very similar to my mum.
(I'm 23) and she has been ill on and off for over ten years - first the breast and now the bone - and trust me if your kids are anything like me - you'll keep your chin up for a long time yet -
I can only imagine how hard it must be - but the odd good days make it worth it.
Hugs
A
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Hello everybody,
i finished my 4 th chemo today. So far so good. havent had any major side effects. 2 more to go. keeping my fingers crossed. Hope to go to singapore after this, Insha Allah(if God wills)
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Dear Fouzi,
So happy to hear that you're tolerating the chemo. I sincerely hope you can make that trip to Singapore. You deserve some good luck and blessings.
Bernice
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Dear Fouzi, I have complete faith in you that you will remain strong through your treatments. It can be scary at times but remember we are all here in spirit to hold your hand!
Lori
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Hi again, glad the chemo is tolerable for you. FYI, I think the oral chemo referred to earlier is Xeloda.
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If I were you I would be getting a second opinion YESTERDAY. Chemo just in case?
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Hi everybody,
I wasn't keeping too well last few weeks, that's why didn't reply to your messages.Feeling better today, finished my last chemo on Monday. the first 4 was fine, but the last 2 have been a bit difficult had lot of body pain and tiredness this time.i was very depressed last week as i couldn't walk or move with pain, now i am feeling better. Still have headache which is normally there for 2 days. hope to be better soon. Thinking of alternative therapies to manage pain. Does anyone have any ideas.
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Good to hear from you again, Fouzia and I am happy to hear you've finished your treatment. Have they any idea how effective it has been on your mets? Are you going to be having any scans to check how things are going soon? All the best for a positive outcome with everything!
Hugs,
Katie xx
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Greetings to you Fouzia:
I am new to the board and have read your posts. Our breast cancer stories sound very much alike. I also was diagnosed with IDC in October of 2003 that had spread to 6 lymph nodes. I had a mastectomy of left breast. I had 7 sessions of chemotherapy and 35 radiation treatments. Then I started taking the drug Arimidex. I was hopeful the breast cancer was gone for good. However, this was not to be.
I started having bad headaches in May 2007 and in July of 2007 was diagnosed with spread of breast cancer to soft tissue in my chest and neck, spine, collarbone, and liver. When I heard all of this, I was so sad and wondered if treatment would help me. I also had a spinal tap because the doctor was concerned the cancer may have spread to my brain. It had not. Thank you, God.
I started treatments of chemotherapy drugs Xeloda and Taxotere. Those drugs are helping me, by making the cancer smaller and keeping it from growing. It has not been easy, because I have had many side effects from the drugs.
Like you, it is my family that has kept me going! I have two sons. Also, my husband has been supportive. I am sorry and sad that your husband was overwhelmed by your cancer. This often happens to many caregivers...
I take Effexor for depression and talk to a counselor who has special training in helping cancer patients. Will you be getting scans soon to see if your chemo is helping? I am also 46 years old. My heart goes out to you! I will pray for you. In Peace-susan320 -
Fouzia,
You mention leptomengeal infilteration...or csf spread. I must have missed it in my searches as I am struggling with it last three weeks and didn't see this one at all.
I am sorry to hear that the last two methatextrate chemos have been hard on you..while the first four seem to have gone okay. Hopefully soon you will be able to put your Singapur plans into place.
There are some poeple who have been concerned about "just in case" chemo plan for Fouzia as the the lumbar puncture test did not for sure say that there is cancer spread in the fluid. Since I am in a very similar boat, I have done some research that tells me the following: MRI is the first line of diagnostic. It may show suspision of cancer cells in the leptmengies or the lining of the spine and brain..where cerebral spinal fluid keeps our nervous system lubricated and safe. Then the actual fluid is sampled using lumbar pucture to do pathalogy reporting. This may or may not confirm the MRI findings. False positives and negatives are common. Sometimes it takes almost 4-5 draws to get actual confirmation. Obviously this kind of invasive procedure multiple times is compared against the overall MRI finiding and clinical symptoms...nerve pain, paralysis of certain nerves, numbness, tingling, nuerological functions deteriorating, etc. and a knowlegable decision is made. So it is really not "just in case"...it is based on multiple sets of tests. Unfortunately in this case no clear confirmation in csf pathalogy...which may be a good news if the cells are very few and not visible. In my case, the results are crystal clear...not sure that makes you feel any better either.
As for the chemo, fortunate for bc gals, methatextrate is a bc drug and comparatively a very mild one. It is the only one known to work so far though there are other alternatives with not a whole lot of successs. So Fuscia, it looks like based on what I have seen so far, you have been on track and have tolerated it well.
My very best wishes to you for recovery now. Your children have been your strength. You will visit your daughter in Singapur. I am rooting for you girl!!!
Don't worry about the rest. You have stayed focused and given yourself the best shot. You are already thinking about alternative ways to manage pain. Wonderful sign. Our prayers are with you. I am thinking about you. Take care.
Lots of hugs.
-luckywife
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Hello everybody,
I am back the computer after a long time. Feeling better today. As I had written earlier I am on some herbal medication and have been extremely tired with lots of aches nd pains and fever on an off. The vaidyar (herbal doctor) had warned me about it but it was so bad I needed somebody to move my hand and legs for me. He says he is removing all toxins from my body and it seems to be working because i have lost most of my puffiness and water retention and look almost normal. Insha Allah as long as it does not give me any side effects I am willing to try. I am almost off all alopathic medicines except dextrose (steroids)2mg a day and painkillers when i feel too much pain. I did meet my oncologist last week and tell him about the treatment and he told me that medically i look better and i can go ahead and try it if I believed in it. Let us hope and pray it will help me in some way.
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Good to hear from you, Fouzia, and I'm so glad that you are beginning to feel better.
Hugs,
Katie xx
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nice to see you back in touch with us
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Hi Fouzia,
I'm so happy that you're feeling a little better.
You have a beautiful family and they sound very supportive.
My prayers are with you all for strength and recovery,
hugs
Mary xxx
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Fouzia,
I am happy to hear you are doing so much better.. I read all of your comments. Please DONT give UP!. We are all here for you. hang in there, and you have wonderful support with your family. This is bets place you can come to.. the women here are wonderful.. You have my love, thoughts and especially prayers.
Donna
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Fouzia,
First and foremost, I send my prayers and best wishes for you. I have no doubt you will be helped by your treatment, the earlier one as well as the new one. God helps us in many different ways.
I am glad you felt well enough to check in with everyone here. Obviously you are much loved and respected here. You will go see your daughter soon too. Your family is beautiful and obviously your strength.
Take care.
-luckywife
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