Questions on brain/spinal fluid mets

• By mwpinknotes
• Reply 3699489
• January 12, 2013 at 3:06 pm
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Hi, Andil.

Sorry to hear that your sister's condition seems to be worse. What is the latest prognosis that your sister was given? Did the doctors confirm if she has some form of leptomeningeal disease? Did she have a lumbar puncture to confirm the presence of LM?

The symptoms that you cited sound very familiar (i.e. headaches, dizziness, deteriorating motor skills and cognition, and falling). Also, with the use of the Ommaya Reservoir, I am assuming that they are using Methotrexate as the chemo agent, although, depending upon the underlying type of bc, they may have tried to use other chemo agents. While you may see that some may mention the use of Xeloda, which can cross through the blood brain barrier, the issue, to date, has been how to get a large enough quantity through the bbb into the meninges and surrounding area in order to be effective. My wife had been on Xeloda which prove to be effective in shrinking mets in her upper chest and neck (we were finally one clean set of scans away from a possible NED). The Xeloda did nothing to stop the progression to her meninges (she had previously had a craniotomy in Jan. '12 to removed large tumor followed by targeted radiation for a deeper tumor in her brain--both were successful).

If your sister has LM, as the medical oncologist probably shared, the prognosis is very poor and the patient is susceptible to a wide range of really debilitating symptoms.

My wife was dx with LMC in July (symptoms actually started to appear at the end of May 2012). She passed in August. Because LM disease is very rare and extremely aggressive, there are not very many posts related to this particular subject especially in advanced stages (whether here on Inspire or on other sites). I usually share comments about our experience with LM in private messages because the journey can become quite challenging and heart wrenching for those going through the experience as well as for those reading posts. As you have witnessed with your sisters deteriorating condition, any type of cancer in the spinal fluid especially LM can change a loved ones condition very quickly.

As for the origin of the symptoms, Methotrexate is a very potent chemo agent. This was one of the reasons why my wife and I opted to pass on the insertion of the Ommaya Reservoir and MTX based upon the information that we received as well as from research, that the side effects could be very rough and the extension of life was not as significant when it came to LMC. However, each individual is different and some may respond to MTX, therefore, each person may choose to undergo this as well as other potential treatment options.

The unfortunate downside is that the longer a person with LM survives, the tougher the daily existence may become due to the advancing symptoms. My wife was taking Dexamethasone (steroids) to try to minimize swelling in her brain which was to also minimize certain symptoms. She was experiencing issues with double-vision, then it advanced to falling, short-term memory issues, behavior changes (regression), and in the end her blood sugar rose dramatically (resulted in her getting diabetic ketoacidosis). Prior to going on steroids, she had never even been diabetic. In her case, the advancement of the LMC plus the side effects of the meds made it very difficult to determine which was doing the most to advance her demise. In any event, however, we knew that the LMC had a very poor prognosis and recognized that her deteriorating condition was more than likely the result of the advancing LMC.

Therefore, we chose to focus on more of the palliative aspects of her care in terms of trying to minimize the symptoms while maximizing, to the extent possible, her quality of life.

There is always hope that some form of treatment will be effective against this form of cancer. My wife was battling TNBC and IBC so when the Xeloda showed a lot of progress in shrinking most of the tumors with no sign of new tumors in her brain, we continued to hope for the best just as we had done from the start of getting such a tough initial dx in May 2011. We never imagined the cancer spreading to her meninges via the spinal fluid. MRI brain scans were clear, however, I believe that a lumbar puncture or draw of spinal fluid from an Ommaya Reservoir is the only way to confirm the presence of cancer in the CSF.

I hope that this feedback helps. I wish your sister the best with her continued treatments. She is fortunate to have you by her side especially during these very challenging time. Take care, Andil.

Sincerely,

David

• By andil
• Reply 3699976
• January 12, 2013 at 6:34 pm
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Thank you, David, for your response. I am very sorry to hear about your wife's battle.

Yes, my sister does have LMC, as confirmed by a spinal tap. Her oncologist said that if anyone could respond to treatment, it could be her, as she has had remarkable results from her "body" chemo. As I mentioned, her first MRI since the treatment for LMC began showed that there is some improvement. She continues to have symptoms, however, and that is very concerning (her oncologist said that the symptoms she is showing are still very normal for someone in her condition).

I do not know what drug is being used in her Ommaya reservoir, but the oncologist said that there is only one option with this. However, with some online research, it seems that I see several different drugs mentioned (maybe there is only one option for someone with her type of breast cancer?)

• By mwpinknotes
• Reply 3700158 · In reply to 3699976 by andil
• January 12, 2013 at 7:53 pm
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Thanks, Andil.

With the LMC diagnosis, the chemo agent will probably be Methotrexate. There may be some ongoing studies or attempts by some doctors to try other combinations, hoping to find a way to at least slow the progression of LMC then eventually get a full response and wipe out the cancer in this very sensitive area. That has been the challenge with LMC in the fact that it affects the most sensitive area of the body, so generally there is not enough time to see if there is a more effective chemo agent or combination. Generally, a dx is not made until there are symptoms that appear plus LMC is not always evident in the initial LPs that are performed.

Andil, your sister has been a long-term survivor and she has certainly responded to a variety of treatments in the past. I wish her the best with the future treatments and hopefully the advancing symptoms will begin to diminish. One of the things that we did was to let family members know that if they wanted to visit to do so while my wife was still able to interact and was somewhat still active. While we knew that time was certainly on her side, we knew that our focus would be on trying to make the most of each day that she had. We were able to celebrate her 49th birthday with her family from Canada over an entire week, cooking, eating, recording videos for youtube.com with her sisters, went out eventhough Melanie was confined to a wheelchair, etc. About a week after her birthday her condition deteriorated with a number of symptoms that I had previously noted setting in. Yet, with her determination, she still interacted with us about 50% of the time up until one week before passing. The last week was definitely tough however, she still has a few tricks left in her bag and was able to interact with us on several more occasions.

As always, Andil, as you know, keep the faith and hope. We will certainly keep you, your sister and family in our prayers each day. If I come across other info, I continue to do research even though Melanie is no longer with us in the event that this rare disease strikes with one of her sisters, mother or even my daughter, I will pass along the info to you. Like when Melanie was with us, we continue to live each day, one day at a time. Again, the best to your sister.

Take care, Andil.

Sincerely,

David

• By andil
• Reply 3701549
• January 13, 2013 at 11:35 am
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David-

David- Many thanks for your continued responses! I am so appreciative!

Ironically, my sister's 49th birthday is this coming Thursday...

After speaking to her this morning, my heart is just breaking. She spoke very well, no confusion- but was complaining about being so lazy and not doing anything (my sister is one who does not like to sit still, and constantly had lots of things going on at the same time). I told her that it was ok to have some "down time", that she needs to listen to her body and rest when she can. She is so frustrated, though, with the turn that her life has taken. (Initially, when she was diagnosed with the liver mets, she continued to lead a very active life, except for the few days a month that the side effects from the chemo hit her.) I am hoping that the positivity she always had will return.

I guess we just take one day at a time....

• By mwpinknotes
• Reply 3702125
• January 13, 2013 at 3:09 pm
• Report post

Andil,

Although a few days early, happy birthday to your sister!!! If she does not have a wheelchair, see if the docs can prescribe one as soon as possible so that you all can still help your sister get out of the house (and bed), if she is feeling up to it. For Melanie, the wheelchair became her "magic carpet" and we went every where. We made it a point to get out every day even if it meant going to a large indoor mall, or, if the weather was nice, we would go on simple outdoor outings. The fresh air, seeing all of the greenery and seeing real people in lieu of watching TV, really helped with maintaining a positive outlook one day at a time. For her birthday week, we made it a week long celebration. Although she would take some naps each day, we would still get out for at least two outings per day beginning in the AM, returning home for her to rest, then, out again in the early evening. Then on other days, we would spend more time around home cooking, talking, sharing, etc.

We had no way of knowing just how quickly the symptoms would advance so we focused on embracing each day, one day at a time.

Again, Andil, happy birthday to your sister on Thursday!!!

Sincerely,

David

• By SDERibbit
• Reply 3705230
• January 14, 2013 at 3:47 pm
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Andil,

I'm so sorry to hear about your sister's condition. My sister had leptomeningeal metastases last spring and passed away about 2 1/2 months after diagnosis. (David and I went through this at about the same time.) My sister did not opt for more chemo at that time and did not have the Ommaya Reservoir implanted. She had not had any chemo at all for about a year. Her doctor offered both the Meth for the brain area and a second chemo for the systemic cancer that was everywhere else (we didn't get far enough to discuss which one), but the specialist that we saw at Johns Hopkins Medical Center for a second opinion did not recommend it.

And our experience from that point on was that the doctors didn't really know what was going on in my sister's body, but it didn't matter, and so it would have been pointless to subject her to any further testing. What was important was to get signed up for hospice and to try to keep her comfortable, which was not easy at all -- the pain and nausea got pretty awful, and she began to not be thinking right.

You see, there are so many things that might be going on at once -- cancer spreading around the abdominal area, calcium escaping into the brain area and causing additional cognitive problems (this is what we were told), whatever damage the cancer is doing in the brain area, and then side-effects from pain meds. Managing all of the symptoms just gets crazy. So really the important thing now is for your sister's symptoms to be managed. Why those symptoms are occurring just probably doesn't matter anymore because there is no way to cure the cause.

But don't just listen to me. I would suggest that you send a note to the "Ask an Expert" at Johns Hopkins. If you Google that, you'll find the website. It's excellent.

Again, I'm very sorry to hear that your sister has meningeal involvement. It's real sad news to get.

• By andil
• Reply 3706228
• January 14, 2013 at 9:34 pm
• Report post

David- I can tell that you were a wonderful husband!! I think you hit the nail on the head when you suggested getting my sister out more. She was never one to like just being home, and now, more than ever, she needs some outings...

SDERibbit- I am so sorry to hear about your sister's situation! My heart goes out to you!!

Currently, my sister is not experiencing many symptoms, other than the confusion every so often (no pain, very little nausea). As I mentioned, the MRI showed some improvement in the brain/spinal fluid mets. (I think I failed to mention that she initially also had 10 treatments of radiation to the head along with chemo for the brain/spinal fluids. She continues with this chemo through her Ommaya Reservior every week.)
However, today she found out that the Petscan shows increased activity in the liver. After a year on the same chemo, apparently it has stopped working, so the oncologist is going to switch her protocol now.

We know that there is no cure, but if she can be given more time, without substantial side effects, we are all for that.

One day at a time, I guess....

• By mwpinknotes
• Reply 3706455
• January 14, 2013 at 11:05 pm
• Report post

Andil,

You are absolutely right, one day at a time. Of all the things that we did during my wife's journey, getting her out especially during those times that she was not as mobile (i.e. walking independently on her own for more than 15 to 20 min.) made a huge difference. Like your sister, my wife was certainly not one to sit around. We took road trips (as she was unable to fly due to brain mets followed months later with the LMC) out of state to watch our daughter compete with her club vb team, went to tournaments around So. Calif., for walks every day, mall, store, restaurants, etc. She was able to stay out longer and really felt that she still had a sense of independence especially since she was no longer able to drive.

As SDERibbit shared our loved ones went through the LMC stage about the same time. Both opted to stop all treatments following the LMC dx. However, as in your sister's case, the combination of the radiation and chemo via the OR seems to be effective at least with respect to keeping the symptoms at bay with the exception of the occasional confusion.

Have fun Andil especially as you all help your sister celebrate her 49th on Thursday. Certainly wish your sister the best with the new treatment regimen to address the increased activity in her liver, as well as the continuing success with slowing the progression of the LMC.

Sincerely,

David

• By andil
• Reply 3708998
• January 15, 2013 at 7:11 pm
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David-

You must be very proud of your daughter!! Is she in high school or college? My sister has one daughter in high school and another one in her first year of college. My heart breaks for them, as they ride along on this rollercoaster we are all on. (Some days I feel strong and am willing to accept whatever will be, and other days, like today, I find myself, out of the blue, feeling like I am going to hyperventilate while I am at work. I guess that is normal though...)

I am so impressed with the dignity and grace with which you handled your wife's journey- there is a lesson for all of us to learn from that!!

• By mwpinknotes
• Reply 3709829
• January 16, 2013 at 1:05 am
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Thanks, Andil!

We try to take one day at a time and embrace each day just like Melanie lived most of her life. While we do miss her every single day, we are also reminded that we still have one another and we talk about Mom, share memories and jokes, talk to her from time to time (she hasn't answered back yet, lol), and just really try to recognize that life is a gift, just as my wife and I have tried to share with our two children over the years. My children (18 yr. old daughter & 24 yr. old son) have either known of me or witnessed me being a primary caregiver to each of my original family members, all of whom were dx with a terminal illness at some point during the past 20 years. Almost 5 yrs. ago both children played a role in caring for my mother here in our home during her final 8 months, which, now in hindsight, was somewhat of a blessing as they were very helpful during what turned out to be their mother's final journey (15 months). I am quite fortunate as my wife blessed me with our two children, so, even though she is no longer with us physically, I have two beautiful reminders of the many years that she and I shared together since we first started dating in college almost 30 years ago.

Andil, there are certainly days where I miss my wife so much that I would give almost anything to see her again, but, then, I take a deep breath and recall so many memories that we shared and made over the years that it brings a smile to my heart. I know that this sounds kind of corny, however, I can't begin to tell you how many times taking this approach brings a smile to my face, heart and soul. She was truly my best friend, lover, confidant and so much more. This is why when I look back over the 15 months journey that she shared and allow me to walk with her, I have no regrets as we lived each day to the best of our ability one day at a time. Instead of chasing life as though we were running out of time, we actually tried to embrace each moment as they came to pass. We certainly took our time to smell the roses and tried to avoid looking down the road to anticipate what was coming next.

Your sister as well as your nieces are very fortunate to have you in their lives and being a part of this very special journey, and please know that I say "special" with a very heavy heart. A couple of hours from now your sister will be celebrating her 49th birthday and I truly hope that all of you have a fantastic time helping her celebrate. We had a great time celebrating Melanie's birthday with her for an entire week this past July. As Melanie chose not to let the cancer define her daily life despite numerous signs of its presence, we, too, chose to take the same approach.

By the way, our daughter was a Sr. in high school last year. Melanie was determined to see our daughter enjoy her final year of high school plus prepare for college. Last April as the deadline for selecting a college approached, and the stress between my wife and daughter grew in part due to Melanie's constant battle with cancer, I reached out to my daughter's top 5 college choices out of the 13 that she had offered her an acceptance and asked for their assistance. I knew that our daughter needed a break before starting college. Her top choice, Drexel University, responded immediately and granted her a gap year so that she could take time off in order to spend with us. I cannot tell you how relieved Melanie was knowing that our daughter's college decision was complete and the next step in her future was being put in place. For our daughter, she was elated that she would be able to focus on helping mom make the most of each day. Of, course, at the time, we did not even think that Melanie would pass just four months later as the LMC had not even come into the picture yet.

In any event, Andil, my heart goes out to you, your sister, nieces and your entire family. By the way, be sure to give yourself a lot of credit for standing by your sister's side especially in light of the fact that she is battling LMC which, as you know, only afflicts 2% to 5% of women dx with breast cancer. As I recently shared with another Inspire members whose wife is also battling LMC, it is okay to feel blue and even depressed from time to time. If needed, reach out to the Oncology Social Worker, if there is one part of the oncology care team. Of course, patients themselves may wish to spend time with an OSW alone or with a loved one(s). Once again, Andil, you are a very special person for continuing to walk with your sister on this very challenging journey. Thanks for reaching out as well as for sharing.

Happy Birthday to your sister!!! And, best wishes with her continuing treatments.

Big Hugs!!! Take care (be sure to also get some rest).

Sincerely,

David

• By andil
• Reply 3712120
• January 16, 2013 at 7:02 pm
• Report post

David-

I should have known better than to read your most recent response while at work today! :) I had to hold back tears as I read with admiration how you, Melanie and your children made the most of each day!!! How truly inspirational!!!!!

I wish I could bottle up your attitude and give it to my brother-in-law!! Unfortunately, he is not handling the situation so well. I know how scared and devastated he must be, but he is very high strung and this causes more stress for my sister. He will also say negative things about my sister's cancer in front of or directly to her (he claims he is just being realistic, but he need not dwell on how much time she has left). Several family members have tried talking to him, but have not had much success. He refuses to talk to a professional.

Anyway, on a lighter note, are you talking about Drexel University in Philadelphia??? I live right outside of Philadelphia!!

Thanks, as always, for your words of encouragement!!!!!

• By mwpinknotes
• Reply 3713109
• January 17, 2013 at 2:16 am
• Report post

Andil,

What are the chances that our paths would cross under these circumstances and my daughter will be attending Drexel University in Philadelphia in the Fall? Wow! I am originally from Long Island, so my daughter, who has grown up in So. Calif. since birth, wants to experience life on the East Coast, taking her a bit closer to where I spent my first 8 years. She is pretty excited about getting started in the Fall, so if you have any pointers, we are open to hearing any suggestions, advice, etc.

As for your brother-in-law, like all of you, I can certainly appreciate what he is going through, especially as your sister is a long-term cancer survivor. This has been a long journey. What I hope that he can embrace at some point in the near term is that your sister has responded quite well to her treatments in the past, achieving an NED status for 8 years prior to the recurrence one year ago this month. Now, in light of the bc mets that you have shared in your post, especially in light of the presence of the LMC, with all due respect, it is imperative that your brother-in-law find someone who he can trust and talk to sooner rather than later. The challenges posed by LMC can be very significant and your sister will need all the positive support that you and all of her loved ones can put together. If your brother-in-law knows the medical oncologist, perhaps, he/she can meet with him along with an oncology Social Worker. Regardless of how frustrated, angry, etc. that he may be feeling, for the sake of his wife and also his daughters, he needs to find a way to help his wife through these challenging times one day at a time. LMC will pose more than enough challenges for your sister, so her husband can stop with the reality checks and comments, until your sister wants to talk about such subjects.

If he is not attending appointments with your sister and getting to know the med onc team, it would be a good idea for you or whoever is attending the appointments with your sister during her current treatment sessions to speak w/the med oncologist and/or the social worker. Initially, it may be best to have a conversation with these med professionals while your sister is undergoing her treatment. Andil, I share this with you while at the same time I am trying to be very careful not to alarm you with respect to symptoms that are quite common with the progression of LMC. It is very important that you help build, hopefully with your brother-in-laws assistance as well, the most positive, supportive environment humanly possible. With the love that you have for your sister and nieces, you are already putting the pieces in place.

Andil, as always, I wish your sister the best with her treatments. Give her a gentle birthday hug (sorry I lost track of the days and plastered my previous post with birthday wishes). You all have a wonderful time. Hopefully, the symptoms and side effects are minimal. Take care, Andil!!!

Respectfully,

David

• By Bethaway
• Reply 3713776
• January 17, 2013 at 10:07 am
• Report post

HI, Andil,

I was diagnosed with LMC in July 2011. (Original stage 4 diagnosis in 2006, original breast cancer diagnosis 1999.)The only option my oncologist at the time gave me was Methotrexate and an Ommaya reservoir. After several second opinions, and a switch to a different oncologist, I chose to take Xeloda and Avastin, and I have been on both ever since with very good results. The side effects have been quite manageable. My oncologist is not sure whether it is the Xeloda or Avastin or the combination that is responsible, and it has been a fight, so far successful, to get my insurance company to pay for Avastin. I also take some supplements and have modified my diet. And I meditate and see a qigong healer. I don't know what has made the difference for me, but I will keep on this protocol as long as it is working.

I just got back yesterday from 10 days of hiking with my family in Chilean Patagonia. I know that I am extremely lucky and I'm grateful for everything that I can continue to do. I don't know how long I have at this good place, but we are truly appreciative of each day.

Please tell your sister (and your brother-in-law) that it is possible to continue to live well after an LMC diagnosis. And do encourage them to get more opinions from other medical professionals. I was told that it was a very hopeful statistic that I have been NED for 6 years, and your sister was NED for even longer.

Warmly,
Beth

• By andil
• Reply 3714557 · In reply to 3713776 by Bethaway
• January 17, 2013 at 1:55 pm
• Report post

Beth-

It is so good to read a positive story about someone with LMC! And congratulations on your adventurous endeavour through Chilean Patagonia!! That is sooo wonderful!!! May I ask what kind of diet you are on? And what part of the country are you in? (asking to see if it is feasible for my sister to get another opinion from your oncologist).

David-

Thanks, as always, for your information and response. My brother-in-law does go with my sister to all of her oncologist appointments, but he tends to only hear the negative, and not the positive. He seems to be so frustrated with not having the "woman he married" and he just can't get passed that. I think he thinks it is a sign of weakness to talk to someone about his feelings/concerns- and, unfortunately, he will never change. So, all that the rest of the family can do is support my sister all the time and give her some reasons to smile when she can. My husband and I, and my brother and his wife will be spending the day with her on Saturday to celebrate her birthday. On Monday, my mom and I, and my nieces will be taking my sister out to lunch, as long as she is up to it.
Small world that you grew up in Long Island- my brother and sister-in-law live in South Orange, NJ now, and their best friends live in Long Island. (My sister-in-law is originally from Livingston, NJ).
Also, my closest friend's husband teaches a course at Drexel University!! When the time comes, I will have to give your daughter my phone number in case she ever needs anything!!

Thanks to you both,
Andi

• By mwpinknotes
• Reply 3716258
• January 18, 2013 at 3:08 am
• Report post

Hi, Andi.

As a caregiver for a number of family members over the years plus a very close family friend, I have seen a wide range of responses to loved ones battling serious illnesses. I can certainly understand your brother-in-law's frustrations with not having the "woman he married." Fortunately, you and your husband, your brother and his wife and other family members are there to provide your sister, nieces as well as your brother-in-law with some much needed support.

Years ago I started each caregiving journey with a saying, "for all those who wish to lend a hand, climb on board as the train was about to leave the station." Generally speaking, when a loved one receives an advanced stage prognosis, I have always taken the view that time is not on our side. Please note that it was not so much as to how much time my loved one had, but really placing the focus on trying to help my loved one make the most of each day. Really embrace each day as though it were a gift, even on the days that had a lot of tough challenges. Finding ways to refocus the perspective from time to time as my loved ones' condition changed helped me help them on their final journeys and, as their illnesses progressed, their final walk. Unfortunately, the reality is that some people may not find the means to provide any level of positive support for a wide variety of reasons. That is alright. It sounds like you all have come to accept your brother-in-laws approach instead of trying to convince him to change, therefore, you can focus most of your collective efforts to support your sister and her family.

Enjoy the upcoming celebration with your sister on Saturday and the lunch date on Monday. By the way, how is your sister feeling? How is she faring with the latest rounds of treatment? How about your nieces? As for your brother-in-law, is he able to get out during the day or is he at home with his wife and caring for her? Just as important, how are you, your brother and mother?

Andi, by the way, thanks for offering to assist my daughter once she starts at Drexel in the Fall. What type of courses does your best friend's husband teach at Drexel? Perhaps, my daughter may cross his path.

Andi, take care. Have a wonderful time celebrating this weekend and enjoy the lunch on Monday.

Big hug to all of you!!!

Sincerely,

David

• By andil
• Reply 3718433
• January 18, 2013 at 6:54 pm
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David-

Your perspective on caring for a loved one is wonderful!!!!

My sister had an exhausting, but wonderful birthday day!! The exhausting part was actually a "good" exhausting- her house is filled with flowers, balloons and cards, and several friends came to visit. (At some point, my mother had to be "rude" and actually ask some of them to leave because they had overstayed their welcome!)

Unfortunately, today was not the best of days- she got a new cell phone and apparently became frustrated with trying to use it, and she had some stomach issues. But, we know that she will have good days and not so good days...

My nieces, all in all, have been wonderful, but do have their "issues"- the older one finds it hard to be away at college and not be there for my sister; the younger one seems to feel resentful at times that she has taken on so many more responsibilities. I try to do some "special" things for both of them (like taking them shopping, etc.), but I will never replace their mother!

My brother-in-law goes to work most days, as my sister is still able to be on her own at home (though my mother goes to her house many days to help with laundry, etc.). He does take time off to take my sister to her appointments.

My mother is a very strong person, but I know how hard this must be for her! (My father passed away unexpectedly when my mother was 58, and to now see her "baby" go through cancer for the 2nd time cannot be easy on her!) My brother and I are "hanging in there"- some days I am more emotional than others! (To be honest, I seem to do better on weekdays when I am distracted at work; weekends give me more time to think!)

My best friend's husband teaches graphic design and photography courses at Drexel. He just started teaching there again after leaving another position elsewhere. What is your daughter interested in? (Both of my kids are Penn Staters, and so is my sister's daughter. I started college at the University of Pennsylvania, but transferred to Temple University. Only my brother left Pennsylvania for college, though he didn't go far!)

Well, have a relaxing weekend!

Andi

• By Bethaway
• Reply 3718435 · In reply to 3714557 by andil
• January 18, 2013 at 6:55 pm
• Report post

Hi, Andi,

I live in Connecticut but two of my second opinions were at Sloan Kettering. I saw Maria Theodoulou, a very compassionate and experienced oncologist, and Thomas Kaley, who is a neuro oncologist. Also a nice guy. You can find them easily on the Sloan Kettering website. Saw big muckity muck there whom I wasn't too fond of but that's another story.

I'm running off now but more on diet later.

Beth

• By mwpinknotes
• Reply 3721202
• January 19, 2013 at 7:24 pm
• Report post

Hi, Andi.

Sounds like the celebration on your sister's birthday was a lot of fun and, hopefully, provided her with a reprieve of sort to put the cancer aside for a while. I hope that you all are having a wonderful time as I believe that you mentioned the you and your brother along with your spouses were going to be visiting today. Your sharing brought back a lot of great memories of my wife's 49th birthday celebration. After a week long celebration, which included plenty of naps each day to help her restore her energy to enjoy the fun, it seemed as though we had been celebrating for weeks. We have plenty of pics and videos that gives us an occasional opportunity to relive some of the wacky times that we shared over those days.

Andi, thanks for sharing an update as to how your loved ones are doing, as well. With our youngest, she was started her Sr. year of high school just three months following my wife's initial dx (Stage III TNBC/IBC). From the outset, my wife and I were determined to do everything possible to try to make her Senior year as enjoyable as possible. My wife hated the fact that the cancer could possibly take away from our daughter's final year of high school including the process of applying to and choosing a college. Long story short, it was not until just prior to the College Acceptance deadline did I realize just how stressful things had become for my wife as well as our daughter. In both cases, it was as though they were trying so hard to keep things "normal" and did not want to disappoint anyone. So, when I shared with them that I had reached out to the prospective colleges and Drexel immediately offered the "gap" year option, there was a huge sense of relief all the way around. Of course, we did not think that my wife's condition would change so rapidly with the unexpected onset of LMC, so we continued to plan out what our daughter would do with her gap year. Although we have had to delay my daughters travel plans to visit with my wife's family in Canada, Dubai and Holland, we are finding other ways to keep her life filled with a variety of activities. I am still going to find a way to give her an opportunity to travel before moving to Drexel in the fall.

By the way, she is very interested in the bio-mechanical engineering program at Drexel. I am sure that she would really enjoy taking graphic design and photography courses as part of her studies as she is very creative, which she gets from her mother, who was a life-long piano player and singer.

As for you having attended U Penn, wow, you can't get any closer to Drexel short of being a student there as well. Are your kids and niece attending Penn State together? As for your younger niece, is she a future Penn Stater or perhaps she will follow your brother's lead and go out of state? It is wonderful that all of you are close to your sister's family which can be a very big plus in terms of having a strong support team. This will provide each of you with opportunities to have some moments when you may be feeling a bit down as you will be able to lean upon one another for support. The love that you all share will help each of you provide your sister with support during this challenging life journey.

Andi, have a wonderful time this weekend with your sister as well as at the upcoming luncheon on Monday. Again, thanks for sharing the updates as to how you all are faring including your sister.

Take care. Big hugs all around!!!

Sincerely,

David

• By andil
• Reply 3726739
• January 21, 2013 at 5:41 pm
• Report post

Hi-David-

Just returned from the day with my sister...

Saturday was a very nice day- my brother-in-law and younger niece had gone to a sporting event, so it was just my older niece (who was in from Penn State for the weekend), brother (my sister-in-law did not come, as their dog just had major surgery), my husband, sister and myself. My brother brought lunch and my sister seemed to enjoy it. My brother felt that my sister was "much more fragile" than the last time he had seen her, but I thought, all in all, that she had a good day- it seemed to be very calming for her.

Today she did not seem so great. She insisted that we still go out to lunch and then we went to a local farmer's market afterward. Her walking was very wobbly and her speech was weak. She commented to me that she is regressing. (My mother commented that this was the worst she had seen my sister, but of course she would not say this to my sister.) I know that there had been some stress because my niece was crying that she did not want to go back to school, and, of course when both daughters are there, they both vie for my sister's attention. We wonder how much of her "not so good" day is caused by the cancer, how much is attributed to the toxicity of the methotrexate, and how much is exacerbated by stress and my brother-in-law's negativity... I am feeling very low and sad right now- my heart is so heavy!! Wish there could be more of your "embracing life" attitude!!

Drexel's engineering programs are supposed to be top-notch- so it sounds like your daughter has chosen a great fit!! Is it a 5-year or a 4-year program that she will be attending?

My daughter graduated from Penn State 3 years ago, but my niece and son are both going there now. Unfortunately, they are not socially friendly with each other, but have taken the bus home together. My younger niece has her eye on the University of Delaware, but she is only in 10th grade, so we will see...

Well, I think it is best for me to go do some cleaning and keep busy right now- but thanks, David, as always, for your posts and caring!!

Hugs,
Andi

• By mwpinknotes
• Reply 3726956
• January 21, 2013 at 7:07 pm
• Report post

Hi, Andi.

Thanks for the update. I am so happy that all of you were able to get together on Saturday, even if others had other commitments. If you don't mind, one of the things that I would like to suggest is that your sister (or her husband) ask the doctor to prescribe a wheelchair that your sister can make use of to help improve her quality of life. The methotrexate is extremely potent and can have some side effects that would make it challenging for anyone to get out and about. Based upon what you shared about your sisters stability and weakened voice, it sounds like she could sure use the support of a wheelchair especially when she is out. We had one for my wife and it was a blessing as we were able to get her out even more, and it was a huge contributing factor for helping her as her condition continued to become more challenging. While she was still mobile around the house for a time only using the chair sparingly indoors, when it came to going out she was not hesitant because she knew that had would have use of the wheelchair.

Quality of life, quality of life, quality of life! This is so important for your sister in light of the fact that she is battling LM, undergoing MTX treatments, dealing with the challenges within the family, plus trying to come to terms with her changing reality. She has a lot on her plate to say the least.

Andi, you have been a blessing to your sister, nieces, mom and other loved ones. It is awesome that you continue to seek ways to keep your sister "connected" to the world. When it comes to extremely challenging ailments such as LM, many people find it quite difficult to get beyond the diagnosis and resulting prognosis, unknowingly falling into a mental state of paralysis and losing sight of the importance of keeping the loved one battling the disease engaged and among the living. As I may have noted in a prior post, when it comes to LM, time is not on the patients side due to the very aggressive nature of the disease. In some cases, such as with Bethaway, the progression takes a very different course and she is able to remain very active which is great. While this is more the exception than the rule, we can all hope that your sister will follow a similar path.

As for your niece at Penn State, I can only imagine the amount of stress that she must be dealing with every single day. As I shared in an earlier post, we sought out another option for my daughter as the stress was present just with working to finish high school, plan for going away to Drexel this past Fall, competing in club volleyball, let alone dealing with Melanie's changing condition. While at the time that I requested assistance from Drexel and they immediately granted a gap year leaving all financial aid in place, we never even thought of Melanie not being here when Bridget would start in the Fall of 2013. We were so focused on living each day to the best of our ability (even on the bad ones) we did not really look down the road to do any 'what if.' We just knew that Drexel gave us such a blessed gift by granting the gap year that we were trying to make the most of it.

Now, in talking to Bridget, she is still relieved that she did not start at Drexel this past September, although she certainly misses the challenges of being in school from time to time.

Andi, you are very aware of other loved ones including your sister. You are absolutely correct with respect to the stress that you sister is more than likely dealing with on the home front. Would your sister and brother-in-law be open to you contacting the Oncology Social Worker (hopefully one is part of the Oncology care team) to schedule a general initial meeting to lay out some of the challenges within the family as well as with any family members who wish to participate. It would be very beneficial to have an opportunity to share while your sister is most lucid as this could change over time. One of the distressing things about LM is that it can make a person feel trapped within their mind depending upon the progression of the LM. Living in the present and making the most of today should be a very high priority, instead of waiting to get better, stronger, etc. That is not to say that we should lose hope for improvement as I have witnessed loved ones making unexpected turnarounds for the better when all looked pretty bleak.

I am inspired by the determination of your sister to still get out with all of you earlier today. Reminds me of Melanie and her determination to get out each day even when she was feeling a bit worn out. It is your sister's will to make the most of each day that will help counter any negativity, which can be rooted in many things. Again, it is a blessing to have you and your brother coming together to lend a hand, especially to provide support for your mother as well.

As for Bridget and Drexel, she will be on the 5 year plan as she is really looking forward to the Co-Op opportunities. While the bulk of her financial aid is in place via academic scholarships, I still have some work to do as we are still recovering from our journey with Melanie. While there are many reasons that I could use every day to give up and be depressed, angry, frustrated, etc., there is nothing that will compare to the way that Melanie embraced life each day while facing and dealing with the LM. I have been blessed with the opportunity to share some time with a couple of others who were battling with LM and, in each of their journeys, they too chose to embrace each day rather than sit around and wait for something better. In each instance, they were determined to make the most of their time, one day at a time. So, when I start to feel a bit weary, I am reminded of these special ladies that dealt with such huge challenges, yet, they continued to march on, even in some instances where they chose to stop all treatments.

Andi, sorry to wonder. I am truly inspired by you all coming together to be a part of your sister's journey. Thanks for sharing, Andi. Be sure to get some rest. Keep the faith and give yourself a lot of credit for walking 'hand-in-hand' with your sister on this very challenging journey. I wish her the best.

Big hugs to all of you, Andi, including your husband for standing by your side as well!!!

Sincerely,

David