Leptomeningeal Carcinomatosis progressive Breast Cancer - 1261773

krispienosnodge99
Posts:4

Hi There

Hoping someone may be able to offer some advice, My sis in law was diagnosed with Breast Cancer with mets to lungs, liver, bones and brain at the age of 23, 2 years ago. For 18 months she responded well to treatment (WBR brain mets, targeted radio and biphosphates for bone mets,Tamoxifen, anti sickness, anti seizure and pain meds) and maintained a reasonable quality of life. In sept she began experiencing excruciating back and leg pain and became increasingly weak. It was presumed that the biphosphates were no longer working and a new hormone based therapy was administered to try and alleviate the symptoms, plus pain meds were increased. This didn't work and by Nov, she was unable to walk at all, unable to even lift her feet (like they were stuck to ground). By end of Dec she was bed bound, suffering speech problems, increasingly tired, vomiting most days and had her eye had begun to petrude from the socket (looks like a large glass eye) which docs attributed to pressure from hydrocephalus. However, scans came back with "no progression" report. Hydracephalus was slightly worse, so she was referred to a neuro surgeon who prescribed alternatives to the streroids to attempt to reduce this, if this didn't work he suggested surgery to fit a port to drain fluid off her brain and alleviate symptoms.

However, since then she has got worse. She has a severe facial palsy to the right of her face, dementia and is unable to keep down food. I noticed last night she had a twitch and her head is slumping as if she is unable to hold it upright. I've searched for explanations, and came across LC mets, which seem to fit the bill and explain a lot of what has been happening. But, docs have not suggested this nor suggested a contrast MRI/lumbar puncture/etc.? I am really confused, she is quite clearly declining rapidly, but other than symptom management her medical team seem unwilling to understand why she is experiencing this.

Has anyone got any experience with this?

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Reply # - January 27, 2014, 11:33 AM

catdander
Posts:

Hello, I'm so sorry your too young sis in law is going through all this, the family as well. Unfortunately if she has lepto there's possibly nothing to stop it. The plethora of symptoms may explain the doctors' unwillingness to try to treat or even perform the invasive lumbar puncture to dx it.

Dr. West and other oncologist on Grace have addressed this question before, " There really is no particularly effective treatment for leptomeningeal carcinomatosis, I'm afraid. I treat it in the setting of lung cancer, not breast cancer, but I and most of my colleagues most commonly recommend against treatment other than a focus on a patient's comfort. Unfortunately, leptomeningeal carcinomatosis is just a complication for which we haven't been able to make good headway.", http://cancergrace.org/forums/index.php?topic=1353.0

Sometimes Methotrexate is used for treating lepto symptoms in breast cancer though in someone with many neurological symptoms this isn't thought to be worth the problems that come with taking it.

I'll ask Dr. Cianfrocca, our faculty oncologist who specializes in breast cancer to comment on your questions. It would be very nice if I find myself to be very wrong about my comments.

All the very best to your sis in law, you, and the family. I hope she can become as comfortable as possible.
Janine

Reply # - January 27, 2014, 02:56 PM

dr cianfrocca
Posts: 49

I am also very sorry to hear about your sister-in-law. It is a very unfortunate situation. I agree that her symptoms are very suggestive that the cancer has spread in her brain and likely the lining around her brain and spinal cord. While there are numerous options for therapy, none of them are very effective, particularly when the disease is so advanced. I urge you to discuss your concerns with her oncologist so that he or she can help you make decisions about how best to proceed.
all the best
Dr Cianfrocca

Reply # - January 29, 2014, 01:06 PM

krispienosnodge99
Posts: 4

Thank you both for so kindly taking the time to share your advice. She is due to undergo another MRI scan, which a neuro surgeon has ordered to assess her suitibility for surgery for removal of 2 brain mets, on the suggestion that if no more mets have cropped up since last scan then he is prepared to remove them and also fit a port to drain fluid from her brain. However the hospice docs have voiced concerns regarding her state of health and that she is not well enough to go through surgery. Still no mention of LC She struggles to make it out of the bedroom let alone out of the front door for appointments, its all very confusing and worrying. Its very difficult for myself and my husband to provide input in her care, parents take her to appointments and are undertaking her home care, we have no contact with oncologists and fear scaring our parents if we were raise our concerns. I wil post the outcome, there is so little up to date information on LC, I have found forum posts on this site so useful.

Thank you again, touched by your kindness and support.

Reply # - January 29, 2014, 09:06 PM

bobradinsky
Posts: 144

A number of the symptoms you describe are consistent with those my wife, Beth, experienced while fighting LMC. I am very sorry your sister-in-law must suffer like this at such a young age. Beth started out with headaches and double vision and her onc immediately suggested a lumbar puncture which confirmed the disease. He discussed the possibility of installing a port but we ultimately decided to let the disease take it's course. She lived another 5 months. From your description it appears your sister-in-laws neurological symptoms are already advanced so I agree with the others that it's possible not much can be done other than to keep he comfortable; however since this is a met from breast cancer instead of lung cancer, there maybe other factors at play. At her young age I would try to give her every possible chance of prolonging her life as long as she could preserve enough quality of life to make it worthwhile. For her sake and yours I hope it is not LMC and the pressure is coming from another cause that can be alleviated with a port. I am praying for your family. Bob

Reply # - January 31, 2014, 06:08 AM

krispienosnodge99
Posts: 4

Bob,

I am so sad to hear of your Wife's story, this disease is truly heart breaking. Thank you for your prayers and advice, its the kindness of others that pulls you through painful experiences like this.

I am sad to report that my sister in law has taken a dramatic turn for the worst and we all fear she may be in her last days. Confusion got increasingly worse this week and she is barely awake now, she and the family has lots of support from in home hospice, she doesn't appear to be in pain or understand what is happening. She is relatively peaceful and so are we.

Love and prayers for all those fighting and for all those lost. xxxxxxxxxxxxxxxxxxx <3

Reply # - January 31, 2014, 06:43 AM

JimC
Posts: 2753

I have read your descriptions of your sister-in-law's disease progression with great sadness and empathy. I lost my wife to lung cancer and LMC, and I know how heartbreaking it is for you to see her decline so rapidly. I am glad that both she and your family are peaceful; that is so important. When my wife realized that nothing more could be done and that the end was near, there was a sense of relief because she had feared that the miserable condition she was in would continue indefinitely.

Sending thoughts for peace and comfort for you and your family.

JimC
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Reply # - January 31, 2014, 07:01 AM

marisa93
Posts: 215

I also want to say how sorry I am that your sister in law was diagnosed at such a young age. It is a very cruel disease. It is good that she is relatively peaceful, may she continue to be. I wish peace and comfort to all of you...

Lisa

Reply # - February 3, 2014, 01:43 AM

krispienosnodge99
Posts: 4

Jim and Lisa, thank you for your kind words. Im sorry very sorry this dreadful disease took your wife too Jim, it certainly knocks the stuffing out of you when you realise how quickly things are moving, I do hope that she wasn't suffering for too long and passed peacefully.

My sister in law has had a difficult few days, she has been sleeping for most of the time, slipping into sleep in the middle of conversations. Yet when she has been waking she is confused and distressed and not making any sense, she is clearly anxious about something. She has been pulling at the bedsheets and moaning a lot too. We are finding it distressing to see her suffer in this way, and worry that it will continue like this for some time. She hadn't eaten in days, but managed 4 spoonfulls of puree yesterday and water through a dropper. Her breathing is irregular, I think they call it Chenyne Strokes but it has been like this for a number of days. It is breaking our hearts to see her this way. Cancer has taken her freedom, her ability to make her own choices and follow her dreams, the chance to have children. It then decided it wasn't done and disabled her, caused her pain and now its taken away her chance to see her nieces and nephew grow up, I pray now it doesn't take away her dignity, our brave, beautiful young lady does not deserve this after all she has been through.

Reply # - February 3, 2014, 06:21 AM

JimC
Posts: 2753

Thank you for your good thoughts. I agree that it is heartbreaking to see the end nearing, but at this point what we can hope for is relief from suffering. In her final week or two, my wife also slept most of the time and she too would fall asleep mid-conversation.

Perhaps hospice can suggest something to calm her in her waking moments, but it does seem that the end is very close. My thoughts are with you and your family.

JimC
Forum moderator

Reply # - February 3, 2014, 07:16 PM

Dr West
Posts: 4735

I'm sorry you're going through this. It sounds like what she's going through now is the very late stages of the dying process. I do not anticipate that she should experience any suffering. You are doing the right thing, and at this point I think it's just a matter of waiting, I'm afraid.

Good luck.

-Dr. West

Reply # - February 4, 2014, 03:32 PM

commodore64
Posts: 37

My mom is experiencing a similar trajectory. In her case, we know it is LMC (from NSCLC Adeno). As horrible as this is, I can't imagine watching this happen to a 23 year old. Please accept my good thoughts and sympathy.

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