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  • Mab60
    Mab60 Member Posts: 487
    edited November 2016

    rose, so glad to hear from you and happy that the therapy felt good even though limited. I hope you know we are thinking of you. Keep us posted please

    Mary Anne


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  • GirlWarrior
    GirlWarrior Member Posts: 25
    edited November 2016

    Thank you for the welcome ! I am not too happy to find myself with this diagnosis - six weeks ago I was celebrating a year in remission, how mistaken I was. I really never fully grasped how quickly things can change with cancer. I did believe that I had a sort of indolent cancer that even if it recurred, I would have time to at least get my daughter to young adulthood. I have had to really grow up this past week.

    I started WBRT yesterday, so two days in and three to go. The decadron is keeping things under control, my head is buzzing and I feel pretty tired, but with an LM diagnosis, who really knows what is going on. No one has talked to me about chemo yet, and intrathecal was not really offered.

    Hello Rose, I hope your lumbar injection goes well , amazing what we can look forward to !

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  • jobur
    jobur Member Posts: 726
    edited November 2016

    Rose, So happy to see you posted and have begun treatment. You are often in my thoughts and I'm rooting for you!

    kt1966 and Girlwarrior, Sorry you are dealing with this rough dx. Hope you are both getting the best of care, information, and support.

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  • steelrose
    steelrose Member Posts: 3,798
    edited November 2016

    Mary Anne and Jo, (((hugs))) to you both. You are always in my thoughts.

    GirlWarrior, I know the shock of coming out of remission into this. You will adjust, but grrrrr... I hope that your treatment is successful and that you will see your daughter grow! We're all here for you.

    Rose.


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  • GirlWarrior
    GirlWarrior Member Posts: 25
    edited November 2016

    Thank you Rose, I don't think anyone actually knows what to do with me. It seems my oncologist is going to let me sort of take the lead with this but no one is really encouraging me to "go all in". No one is saying, throw in the towel, but that seems to be between the lines. I am really curious to see what treatment options everyone pursues. Since I am not being offered anything, I have decided to try something experimental, not because I think it is best, but because I am desperate/motivated. My heart goes out to you and each of us who are in this tough place.

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  • kt1966
    kt1966 Member Posts: 1,326
    edited November 2016

    Hi everyone, I hope you are going well today.

    GirlWarrior, I hope the WBR goes quickly. I had 10 treatments (as well as 5 to lower spine for spinal cord met & 4 to upper spine for LM) it was certainly tiring & im still tired- but chemo doesn't help ;) I'm in NZ & they don't do intrathecal chemo here, what country are you in?

    I hope your PT is going well Rose

    I've just found out my tumour markers have gone up by 400 points over the last 3 weeks - I'm not confident that chemo is working. Along with the increased symptoms (more facial spasms, neuropathy, double vision, headache, spinal discomfort, gait unsteadiness....) it's quite scary. Not sure if there's much left on the table for me :(



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  • steelrose
    steelrose Member Posts: 3,798
    edited November 2016

    Kt,

    Your post makes me so sad. I wish you could get to a place where they offer intrathecal chemo. What is your oncologist saying? Is there nothing else? I know how scary this is. I'm still not walking but haven't given up on these legs working again. So scary though...

    Please know that I'm thinking of you...

    Rose

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  • kt1966
    kt1966 Member Posts: 1,326
    edited November 2016

    Hi Rose,

    I see my oncologist on Monday morning, so I'll find out then if he agrees it all points to progression. If by some miracle it's not progression, then I can put up with the se's etc, but it's not worth it otherwise.

    I hope you can get back to walking, maybe a little more time? It must be frustrating and scary. Anyway, I'm thinking of you too. Take care, kt

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  • kt1966
    kt1966 Member Posts: 1,326
    edited November 2016

    Hi all, I hope you're all ok and keeping things under control.

    So, I saw my oncologist this morning. He believes it's progression.

    He has nothing left to offer me :( So I'm left in hospice's hands now. Still coming to terms with it. Thank goodness my husband was able to come with me today (not my 19 yr old son).

    I'll wait till the weekend to talk to the kids (daughter will be back from university then). My parents will want to know about today's appt, but I don't know if I can trust my mum to hold it together in front of the kids : /

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  • steelrose
    steelrose Member Posts: 3,798
    edited November 2016

    kt, I'm so sorry. You are my age, and it all seems so unfair. Your kids will be strong... no doubt if they are anything like you. I'm a little surprised that your onc isn't offering anything. Trials? Where could you go to get the lumbar chemo? I don't know enough to offer suggestions but please know that you and your family are in my thoughts.

    Sending love across the miles...

    Rosr

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  • Iwrite
    Iwrite Member Posts: 870
    edited November 2016

    KT - Thinking of you and your family today after seeing your post. So sorry you got this news. Hoping for you that your favorite people are nearby and you receive lots of love in the days ahead.

    Rose - Hoping you are able to heal from the pneumonia and get on your feet again soon!

    Girl Warrior - I'm sure you would rather be anyplace but here. Hoping you see some good results from treatment.

    I'm visiting these days to say hi to ladies who have moved from other forums...I think of you often and care how you are doing!

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  • kt1966
    kt1966 Member Posts: 1,326
    edited November 2016

    Thanks Rose & Iwrite,

    No lumbar chemo or intrathecal chemo here & all the trials are closed or unsuitable.

    My symptoms have gradually getting worse so I guess it's no surprise.

    I hope everyone else does really well for a long time on their treatment/s

    Take care

    kt

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  • mara51506
    mara51506 Member Posts: 5,088
    edited November 2016

    Just dropping in to let Rose, KT, GirlWarrior that I am thinking of you three today.

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  • GirlWarrior
    GirlWarrior Member Posts: 25
    edited November 2016

    Hello Ladies, Just checking in to see how all the LM girls are doing. Me, I am like a rollercoaster of emotions -it has just been so hard to go from living my normal remission life to this craziness so fast. I have spent alot of time since my diagnosis on October 21 - just 2.5 weeks - trying to take care of business. I needed to quit my job and then commute my pension to provide for my husband and little girl. There was just so much paperwork with my employer, and the government and the bank. I am finally done, but now I need to set it up in a trust and I have to see a lawyer to write a will and I am so worried they will not be okay - she is only 9.I did finish wbrt -just 5 days - and I am pretty tired. I ended up in the ER yesterday with some crazy bacterial infection - so now I need to go see the infectious diseases clinic. Ugggh. I am just really worried because my hands, my feet my face, my nose are all tingling and buzzing and my ears are ringing like crazy. I dont know why, but it seems like,things are progressing so fast. I am really scared. I am in Canada and we do intrathecal here, but my oncologist does not support it for me and I dont know why. This has been the hardest 20 days of my life and I have so much respect for you ladies who have been living with this much longer then me. I am thinking of you both kt and rose and thanking mara for your compassion.

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  • mara51506
    mara51506 Member Posts: 5,088
    edited November 2016

    GirlWarrior, I understand what you mean about the buzzing. Though I don't have LM, I recently underwent WBR that finished Sept 23. I am still having many issues so give yourself time to rest. It is a LONG recovery period.

    I am also in Canada but have not asked about IT chemo since I have not had followup MRI. That should happen in december. I wonder if part of the issue is getting the government to approve the treatment. My onc has had to prescribe chemo to me, even though no cancer from the neck down, in order to make sure I can get a certain targeted therapy (Perjeta). She would not be able to get it otherwise, ontario government would not approve. She plans to drop it quickly.

    I hope your WBR will buy you some good quality time and give you the long lasting results that some others with LM have received.

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  • kt1966
    kt1966 Member Posts: 1,326
    edited November 2016

    GirlWarrior, I hope all that buzzing etc is just se's from WBR (most likely is) and will settle down as time goes on. It definitely takes a while to recover from.

    It sounds like you've been very busy too. (I need to take a leaf out of your book & start sorting stuff too, I keep putting it off). I hope they sort the infection quickly for you, you don't need that right now :( (I'm on prophylactic antibiotics since I've been on steroids for 4 months now)

    Rest up and don't push yourself too hard now, then you will recover more quickly. I hope you feel better soon.

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  • GirlWarrior
    GirlWarrior Member Posts: 25
    edited November 2016

    Ladies of wisdom you are my guiding light right now - slow down, rest more, stop pushing, be patient. Thanks for talking me down.

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  • steelrose
    steelrose Member Posts: 3,798
    edited November 2016

    kt... worried about you and the earthquake in NZ. Just worried about you

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  • steelrose
    steelrose Member Posts: 3,798
    edited November 2016

    girlwarrrior... this is very hard but it's.comforting to know you are there too. Please be kind to yourself.


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  • mara51506
    mara51506 Member Posts: 5,088
    edited November 2016

    Rose, just wanted to let you know I saw a post from KT on another thread. It seemed to indicate she does not live where the earthquake was. She is OK on that front. I am sure she'll pop in soon.

    I hope things are going as well as possible in rehab. I have been thinking about you, KT and girlwarrior.

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  • kt1966
    kt1966 Member Posts: 1,326
    edited November 2016

    Morning (here anyway) girls,

    Sorry I haven't been posting too much. I find quite hard and slow to post now, even reading posts is hard work. My eyes seem to have double vision most of the time now...

    Thanks for thinking of me with the earthquake. I'm in the North Island and the quake was centred at the top bit of the South Island. My sister lives (in Auckland) an hours drive south of me and felt the quake, so it was very strong!

    I hope you girls are all doing ok and keeping se's and symptoms under control. Hope rehab is going well Rose.

    The hospice nurse had to come around a few times on Friday and the weekend as I was feeling really bad. Lots of vomitting (tmi- incl some nasty colours). Got some new meds at the dr including slow release morphine and new anti nausea. And I have meds lined up that can be given sub-cut by the hospice nurse or ambulance people if I can't keep anything down. Good to know!

    I can't really walk anymore now apart from slow shuffles around the house etc. my energy has disappeared (haven't eaten much lately) and my balance is terrible. I did manage to go out for coffee with a friend today, bless her. She collected me & dropped me right outside the cafe etc. So nice to feel normal for a bit :)

    I'm hoping as I feel more comfortable I will be able to eat more and get some energy back and get more active again. My daughter and her boyfriend are home from uni at the mo, so it's great to have everyone here.

    Take care, and thanks for being here x

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  • mara51506
    mara51506 Member Posts: 5,088
    edited November 2016

    KT, glad to hear from you. I hope you can get symptoms under control enough to enjoy some time with family too. That is important. Glad you could get out for coffee. We tend to underestimate how good routine things are for sure. I went out and bought pants, but that was enough for me today to feel good. Hope things continue to improve and you are comfortable soon. I will keep checking on you. All the best.

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  • kt1966
    kt1966 Member Posts: 1,326
    edited November 2016

    Hi. I'm at in-patient hospice now. I was admitted yesterday morning.

    They've put a leur from a slow pump in my arm to give continuous pain & nausea relief which makes a huge difference :D

    The dr (lovely) & nurses I've met here are fantastic. It's so nice to have someone so knowledgable & always at hand.

    I feel so much better than this time yesterday. Sorry running out of energy again. I think there's a little more to iron out, but we'll get there.

    I'm glad your managing to get out. Thinking of you. Enjoy the rest of your weekend

    kt


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  • steelrose
    steelrose Member Posts: 3,798
    edited November 2016

    kt, I'm so glad you're being cared for. The nurses and doctors make all the difference. Rest, rest, rest... and know you are being thought of by me.

    Sending love to you and your family...

    Rose

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  • mara51506
    mara51506 Member Posts: 5,088
    edited November 2016

    KT, I am so glad to hear that your nausea and pain and being controlled so much better. Just to have the ability to feel a bit better does wonders. I am also glad you were well enough to let us know how it's going. I also think about you and your family all the time. I agree, rest up, you deserve it.

    Rose, I am thinking of you as well, hope some progress is being made on your end. You are so caring to worry for everyone else too.

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  • kt1966
    kt1966 Member Posts: 1,326
    edited November 2016

    Thanks girls. How's the rehab going, Rose? I hope getting better day by day. Mara you are so encouraging. How're you going?

    It was so nice to sleep thru the night without having to get up :) bliss. Today I've had a shower with help & had 3 lots of visitors.

    I have a 'minder' which weird just in case I have a fall (a nurse aid) outside my room. Hopefully they can let them go soon as it might be the most boring job ever!

    Take care

    kt

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  • GirlWarrior
    GirlWarrior Member Posts: 25
    edited November 2016

    KT I am so glad to hear this. It can be so hard to try and take care of yourself when so many things start to go wrong. Having these people to care fo you now is such a blessing. When the time comes, I am going to follow your lead and do the same. I am just shocked at how fast that time is coming - didnt expect things to progress so fast. Please rest and enjoy each and every moment that you can.

    Rose and Mara thanks for being here in what feels like such a hopeless place. I do feel so much for all of us.

    Christine

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  • kt1966
    kt1966 Member Posts: 1,326
    edited November 2016

    Thanks GirlWarrior.

    It is nice being looked after :) I think we'll see how things go once everything's under control I'll be able to go home again.

    Meantime I get to relax & enjoy being fed (I can actually eat!) and visit with my family & friends :)

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  • mara51506
    mara51506 Member Posts: 5,088
    edited November 2016

    KT, thanks for asking about me, I am doing OK. I started chemo which has made me tired but OK otherwise. I am so happy to here you are able to eat and actually getting some good rest. This makes me happy to hear it.

    Girlwarrior, I hope things are OK with you as well. Get as much rest as possible. It will do good for sure.

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  • steelrose
    steelrose Member Posts: 3,798
    edited November 2016

    You all are such a comfort... although I certainly wish we weren't in this horrible situation.

    I'm home after a month in the hospital and then rehab. I still can't walk but I'm able to take care of myself. I have nurses and rehab at home now which insurance is paying for. I feel very fortunate. I've lost a lot of weight because I have swallowing issues. But tonight I'm eating mashed potatoes and they taste sooo good!

    This is a struggle. I hope for peace and resilience for us all.

    Please keep the updates coming!

    xo

    Rose



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