Starting Chemo April 2009
Comments
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This week has been challenging, but we can see a slight improvement with my daughter. I remain cautiously optimistic, as we have seen how quickly she can slide backwards. We are taking it day by day.
Betsy, thank you for the encouragement.
Geri, and all of you, sending you love and hugs and hoping that you are all feeling well and ok. Geri, please come by when you can. We are thinking about you.
Wishing you all a warm weekend, much love, Judy x
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I continue to have COMPLETE success taking the pill that the specialist gave me for my ear/brain problem. I am taking 1/4 of a pill (a tiny speck) each a.m. and have NO problems AT ALL. If I go out somewhere in the evening that could potentially be a problem, I take another 1/4. We went out to dinner on Sat night - just a little local place (nothing fancy) but there was a noisy table of 8 right near us and I just ate and talked and relaxed and NOTHING HAPPENED. That would have been impossible previously. So this is a big breakthrough and I am relieved.
All else is well here.
I continue to carry Geri on my heart - it is a month since her daughter was to deliver. I don't know what to think. All we can do is wait.
And Judy, you too. Glad the recent news was encouraging but know we are here for every up and down along the way.
Love to all.
Amy
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Amy, so happy to read that your medication is helping you.We have had a challenging week, this weekend my daughter won't come home as last weekend was quite difficult, so we agreed with the doctors that she should stay in the hospital this week. She also feels that this is the right decision.
I am feeling very worn out, but managing to get through the day. My therapy and medication is definitely helping me with that.
Geri, we are thinking about you and hope that you are all ok. Please come by when you can.
Helen, hope you are feeling well and that your son is too.
Hope everyone else is doing ok. Wishing you all a good weekend, hugs to you all, Judy x
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Had a very bad dizziness/illness event on Fri - by far the worst yet and different from the prev. Very sudden and very scary. Am trying not to get discouraged but it is difficult.
However, last night I went to a superbowl party (which was tense for me and i did not enjoy it, but I did not get sick so I guess that is progress). Anyway, at the party I met a woman who is a microbiologist/scientist working on cancer drugs. We had talked at an earlier party about what she is working on. Last night she took me aside and told me that the drug she has been working on (for years) just got approved for BRCA+ women who have mets cancers. it is a PARP inhibitor, which (as I basically understand it) fights cancer cells preferentially, as opposed to chemo, which kills ALL cells. Her drug is outlined here: Lynparza BUT what was cool is how enthused she was about the success of this drug, and how they are now working to get it approved for breast and prostate cancers as well (is only approved for ovarian so far). It really encouraged me that new/different things ARE being done and, esp for women with the BRCA mutation, there is a lot to be hopeful about. Judy, she also mentioned that there are A LOT of trials and work being done specifically in Israel, so I wanted you to be aware of that.
OF COURSE I hope that none of us ever needs any of these new meds or treatments. But it means a lot to me to know that the awful stuff we went through may someday be considered antiquated, and much better, easier treatments may be available.
Well, on with the day. Wishing everyone a good week
Love
Amy
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Thanks for thinking of me Amy, I had heard that work was being done here in that area. Wouldn't it be great if future BC patients had a better and more manageable treatment available to them?
Sorry that you have not been feeling 100%; hope that was a one off and that it doesn't come back like that again.
Geri, hope you are doing ok and Helen, how are you?
My daughter is making very slow progress, just when we think we are moving forward, there is another episode. She is struggling and so deeply sad and at the moment, no one can seem to get to the bottom of it. It is heartbreaking to see her like this and I can only hope that she will get through this. But for now, we know that she is in the right place and will need to be there until she feels better and more able to cope.
In addition to the therapy that both my husband and I have with our own therapists, we will now be having a weekly meeting at the hospital with a social worker, to give us any support we may need and she also acts as an advocate if we need help with issues relating to the hospital. Sometimes I just want a boring, uneventful day or week
...Wishing everyone a good week, hugs to you all, Judy x
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Judy, so sorry that your daughter is in such a difficult struggle. Such things are so hard on the entire family but it sounds like you are doing all the right things to support her and to take care of yourselves.
Amy, you also have challenges. I hope that the meds prevent any more episodes. Wouldn't it be nice if we could control our bodies?
I hope the woman you met is right and that they do come up with more effective drugs to fight bc. All too often we hear about promising drugs that fail during the clinical trial period. But maybe this one will work.
Overall, I'm doing ok. Hating the long cold winter.....wish it would be over faster. It does affect my mood and my activity level but I must continue to try to fight it. At least the days are getting a little longer. It's not getting dark until 5:30 now instead of 4:30. But lots of snow and cold. I wouldn't mind being somewhere warm for a couple of weeks but that isn't going to happen this year. If that's my worst complaint then I really should not be complaining.
Still no word from Geri. Very concerning
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I am so sorry I caused you all such concern. My daughter had the baby 12/23 - Noelle Victoria- she weighed 5 lbs. 2 oz. and had a rough entry into the world (cord around her) but ultimately she and my daughter did well and came home 4 days later. My daughter needed a lot of help the first two weeks, since she had been hospitalized for 14 weeks and was very run down. I was with her most of those two weeks until I went out to get gas, stepped in a hole at the gas station, and fractured my knee and my hand. As you can imagine, between the birth of my granddaughter and dealing with the fractures, I was beside myself. Again, I think the AI's probably didn't help with the bones. My right hand is in a cast and my right leg is in a brace. No driving for the past 3 weeks, so I have only been able to see Noelle once in that time. I have about 3 more weeks in the cast, don't know yet how long in the brace, and then PT. I can deal with all of this because my daughter and granddaughter are doing well.
It is hard to type with the cast, so I can't write as much as I would like to tell you all that I hope your troubles leave you soon. Thank you for keeping my family in your prayers. I will update once I get this cast off - love to you all.
Geri
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I cannot express my happiness at your post Geri. Your hand and knee sound terrible, but they will heal over time. But Noelle will be a joy to you more and more and more as the days, months, years go by. I am so glad she and your daughter are fine.
I'm not making light of your terrible accident - how upsetting. BUT as the days pass, it will be behind you and you will have so much fun with your sweet little Noelle.
I go to NYC to see my parents tomorrow overnight and then down to Philly to see Ruby, who talks up a storm, more and more each day. She is truly the light of my world.
Love to all - stay warm.
(and special love to you, Judy. Hang in there - this sounds very difficult.)
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Geri, what a relief to hear from you. Wonderful news on the baby and your daughter! But your injuries I know are painful as well as inconvenient. But they will heal. And you'll always have little Noelle. A granddaughter is a joy.
Amy, enjoy your visit with Ruby.
My 7 year old granddaughter is the only person who cares when I go to the hairdresser or wear something new. She calls me on FaceTime so we can see each other.
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Geri! good to hear from you! sounds like you have been pretty busy! love the name Noelle...that is my daughter's middle name...I love it. -
Geri, just thrilled to come by today and see that all is ok with you. I know that the hand and knee are troublesome now, but all being well, they will heal and you will have the joy of Noelle in your life for many years to come! What a beautiful name and I am so happy that your daughter is also doing well now. I thought about you all every day and you have really made me smile this morning and for that I am so grateful!
Things with us are still a challenge, but Noelle has lifted my mood, so I will save that for another post.
Enjoy your Sunday and sending love and hugs to you all, Judy x
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Just coming by to see what's doing. Judy, I think frequently of you and your daughter. I do hope and pray that your family will overcome these challenges. Nothing exciting here ..... But boring is good.
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Well unfortunately we have excitement. The worst possible kind. Our immediate next door neighbors (a lovely couple in their mid 70's) were found brutally murdered in their home yesterday. They think the murder was over this past weekend.
We are beyond devastated and it is a huge crime scene here with tons of police and detectives, as well as the press knocking on our door asking for comments.. The stress level is unbelievable. We are just trying to hang on day by day. However today was worse than yesterday as more info came out. So I do not know if the day by day approach is going to work. They think it was not a random act, so we do not feel at risk or in danger. But these were kind people and wonderful neighbors and I served on the community board with the husband for several years and became pretty close. So this is very terribly difficult.
I saw the ear doc for a follow up today. He is pleased with my progress and suggested some other things to try. I see him in two more months. So that was good.
I will check back in soon and hopefully I can tell you that things are at least a little better. I do not know how we are going to get through this.
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Things have died down here - police are gone, crime tape is gone. It is very quiet. TOO quiet with our poor neighbors dead and gone. Three arrests so far, one still pending. The head guy was the 'baby daddy' of their granddaughter's baby. He saw the inside of their house TEN YEARS ago (when he was a sort of family member) and has been planning this ever since.
His 'crew' have done other home invasions as well - that is how they caught them, from another one, which led to this one.
We are nervous wrecks here. Trying to get an appt with a trauma specialist this week.
I never thought I would say this - but in some ways this is worse than cancer. Not in ALL ways, but in some. We are shattered.
Send me a little love, ladies, and prayers if you pray. This is very very terrible and hard.
Love to all my sisters.
Amy
ps This happened the night Ruby was sleeping over. I cannot even comprehend that she was FEET away on that side of the house as this terrible act of violence took place.
pps - Edited on Monday to add - they caught the other 2 guys involved today. I am feeling a measure of relief.
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Amy, this is too awful! What a terrible thing to happen. I don't know what to say to you, I cannot imagine how frightening it must be. I am sending you love and prayers that you will get through this and be able to move on with some measure of calm in your lives. Sending you a big (((hug))) today.Helen, glad to read that nothing to report from your end; you are right, uneventful is definitely good.
Geri, hope all is well with you and your family.
We are doing ok here; getting close to my son's Bar Mitzvah and my daughter is not making much progress at all. We are meeting her case manager next Monday evening, but I just do not know what to think. I am not sure if a part of me thinks she may be holding herself back from moving forward till after the Bar Mitzvah, as she may not feel that she can face it. I just don't know what to think.
Take care all of you, stay safe and I hope you are beginning to see signs of Spring.
Much love and hugs to you all, Judy x
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OMG Amy. That is terrible terrible. What is wrong with people who would commit such a heinous act? There is so much craziness in the world. I do hope you get to see a trauma expert who can help you to get through this.
And Judy, I know all this worry about your daughter is taking a toll on you and the family.
Thinking of both of you and praying for improvement.
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Last night was a community meeting I organized about the crime. The sheriff came and spoke and answered questions, and we had a trauma therapist discuss the aftereffects of going through something like this. About 75-100 people came out. It was a big success, but all that discussion of it was very unsettling to me all over again.
We are doing a lot better - eating/sleeping/working. But there are times when it is hard to deal with what happened. The funeral was very difficult, and sometimes I see the daughter/husband parked next door and working inside (cleaning up, I think - as the place was ransacked).
It is day by day, but spring is coming and that helps. I spoke with a number of neighbors who live close by at the meeting last night and they are all very unsettled. Being together helped.
Life is hard sometimes, as I know you all know.
Love to all - Amy
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Amy, I know this is such a difficult situation. It will take a long time for your feelings to settle and even then the thoughts and feelings will still be there. It really was a terrible tragedy. Don't be too hard on yourself.
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Well things are better here. Gradually, day by day, peace is slowly returning. I wouldn't have believed I could every say this, but I am getting used to what has happened. Some things still bother us - when there are workmen next door, or the daughter comes over to clean, it reminds us. But I do not feel we are dwelling on it all the time, like before.
I have a question - I received a life insurance solicitation yesterday (not one I would use, but I read through it anyway) - on the medical questions, it said "Have you been diagnosed with any type of cancer within the last five years?" So it struck me - we can now answer NO, right? So does that put us beyond the look-back period for insurance in general, does anybody know? That seemed kind of significant to me.....
Here is a happy Ruby photo that I think you should be able to view: https://instagram.com/p/0wQdUYo3nT/?taken-by=amyko...
I hope all is well with everyone. Judy has the bar mitzvah happened yet? How did it go? I hope it was a special day for your son, and memorable as a happy time for your family.
Love to all - Amy
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Amy, your photo brought a smile to my face - thank you!
I am sorry that I have been away so long, but things here have been very challenging. My daughter went through a particularly difficult few weeks, but is coming out of it now. I find myself constantly exhausted, but my therapy is definitely helping.
We actually begin the celebrations for the Bar Mitzvah tomorrow night with a party, which is very exciting and we will have the religious ceremony this Saturday. My family have arrived from London and it is fun to be together. We are hoping my daughter will join us. I have arranged to talk to her case manager when I visit her this evening. I have already lined up a nurse to be present at the party to keep an eye on her from a distance. We felt it was the only way that we could relax.
Amy, I hope that you are managing to move on as a family and a community after this terrible tragedy. I cannot imagine how difficult it must be. I think about you often.
Helen, how is your son and the rest of your family?
Geri, I hope that your daughter and family are doing well.
I will come by again soon and as always, send you all much love and hugs!
I can hardly believe we have been here for 6 years together already
Judy xxx
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Amy, what an adorable picture. Her personality sparkles through. I hope you and your community are finding ways to begin the healing.
Judy, Mazel Tov on your son's Bar Mitzvah. I do hope your daughter will take pleasure in the celebrations. I do hope the doctors are able to find a way to get her on a positive path. Mental health issues are so complex and so difficult. Please do take care of yourself.
New baby due in 4 weeks. We are very excited to meet this new little boy. I've been on Tamoxifen now for over 6 months and seem to be tolerating it ok.
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Judy - thinking of you today for the Bar Mitzvah. I hope it is a wonderful day for your entire family, but especially for your son, as it is his special day. Congratulations!
Helen - only 3 more weeks till the baby now. So exciting for you and your family. I am glad the Tamox is going well. Anything we can do to help stave off another recurrence is a good thing.
To all - doing ok here. Spring is here and very welcome. Feeling better, both about our home/neighborhood and with the problem with my ear/balance. The pills have been working very very well and I barely think about it much anymore. It is kind of amazing.
Love to everyone. Amy
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Hi ladies,Well, the Bar Mitzvah was wonderful! A true celebration with family and friends. We filled the room with people we loved and everyone said that the atmosphere was electric and full of happy vibes. The Saturday celebration was very special too. By the end though, my daughter was wilting a little, but she managed very well up to that point. My son had a ball and all in all it was a great success; definitely worth all the planning that went in to it.
She has continued to improve since then which is encouraging and now we are looking into a school for her so that she can graduate and receive the emotional support that she needs at the same time.
Helen, you must be very excited now, please keep us posted!
Amy, glad to read that things are improving for you all round.
Geri, I hope that things are good with you and the family.
Sending you all hugs as always, take care of yourselves, Judy x
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Judy, go glad the Bar Mitzvah was such a success. Best wishes and hoping your daughter continues to improve.
Well, our baby arrived a little early but at 6 lb 7 oz is just fine. My DIL had just had an u/s which showed nothing happening and then was waiting in the doctor's office for her regular checkup when her water broke. Little boy is adorable and big sister seems enthralled with him. Everyone doing well and I'm On grandma duty this week. But no complaints.
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Wonderful news Helen! Congratulations!
Hope mother and baby are doing well and that all the family are enjoying!
I had a routine Endoscopic ultrasound today and all is clear 😌
Sending hugs to you all
Judy xxx
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Helen - congratulations on the baby. What a joy!
Judy - congratulations on the bar mitzvah - it sounds wonderful. And your daughter's slow but steady improvement (which is probably the best kind) and your clean ultrasound.
All fine here. I see the oncologist for an annual check up in a few weeks. Am going to tell her about the bone thinning in my ear (which has caused all the nausea problems) and see if she thinks the Arimidex could have contributed to it. Curious to see what she says. Last year she said I could stop taking it if I wanted (since it's been 5 years) and I opted to continue. So I know she isn't super sold on it one way or the other.
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Hi ladies, sorry that I have not been by for so long. Helen, hope you are all enjoying the new baby and Amy, hope you are feeling well. Please let us know how your Onc check up goes.Geri, hope all is ok with you and your family.
We are doing ok; we are busy now with the process of finding my daughter a school (including sleep away) that will cater to her emotional needs. We had the first of many meetings this morning and I imagine this will be taking up quite a lot of our time in the coming weeks and months. As the end of the school year is almost here, we need to move fast but still make sure that we are thorough and find the best place for her. She is not doing too badly at the moment, although there is a lot of tension between her and her older sister which makes her weekend visits home quite stressful at times. Although I have decided that they need to resolve it between themselves. There is a limit to how much I can take on in any given day
.I will keep you posted and really appreciate your support.
Unfortunately, a friend of mine (also the mother of one of my daughter's closest friends) is going through BC at the moment. She has had a lumpectomy and genetic testing (which was negative) and is now waiting to hear on her treatment program. So I spend time talking to her and helping when I can. She said that she didn't want to take part in a support group, so I highly recommended this site to her and told her that I have been coming here for 6 years and have found the most wonderful group of women here : - )
Sending you all a big hug as always and I will come by again soon.
Judy xxx
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Hello all,
Well, I sm back finally having gotten rid of my cast on my hand and just coping with my leg. No brace, but still in PT. I had a cortisone shot 3 1/2 weeks ago which was great for about 2 weeks, but now only about a 50% improvement. I see the doctor on Thursday - surgery may still be in the picture.
I had to have genetic testing done again because of my 27yr old neice's metastatic cancer and her positive ATM and CHEK2 genetic mutations. Her father (one of my brothers) was also pisitive for both, as was I. These markers were not known when we were diagnosed and increase the risk for colon, pancreatic and ovarian cancer also. IMy oncologist called to make an appointment to discuss (which is tomorrow) so I will see what she has to say. I had a scheduled endoscopy a few weeks ago, which was a follow-up to some atypia last year, and the pathology is for Barrett's esophagus - a pre-malignancy that requires annual endoscopy. I am not so concerned for me, but my daughter now needs to be tested, and then we have my little Noelle...does it ever end?
Ok, enough venting! So happy your son's Bar Mitzvah was a happy occassion Judy. I hope you can find an appropriate school for your daughter and that she will improve.
Helen - congtstulations on your new grandson. What have they named him?
Amy- so very sorry you have had such an awful occur acne right next door. In a way, the fact that it was not random must make you feel safer, but what a horror for those poor people. Ruby's picture is so sweet! It's clear you are so enjoying being a grandma (just as I am)
I will let you know what the oncologist has to say. Here I was looking forward to the end of AI and active treatment, and now...who knows. Oh well, if ?I have learned anything from this experience and from all of you, it's that we can't control some things. Happily, I will end by saying my daughter and granddaughter are both doing great, and yesterday was Noelle's christening and we had all our family there to celebrate...it was wonderful!
Geri
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I saw my onc for my annual checkup. I now see her once/year and the surgeon once/year for mammogram. So I explained my situation about the bone thinning in my ear and asked if the AI could have been responsible. Also told her some other symptoms I've had with the AI - achy-ness, feeling older, more tired, definitely more irritable. She advised me to stop taking it. She said that she has always felt (and more recently science has reinforced) that women with her2+ and a single hormonal presence (ER+ or PR+) develop cancer that is more likely driven by the her2+ than the hormone. And she felt that Herceptin was definitely successful in my case. So since I've had 5+ years of an anti-estrogenic, AND had my ovaries out (in the hysterectomy in 2013), AND since I am reporting quality of life issues with it - she said it's time to come off. I got scared, but she talked me through it.
So last night, for the first time since 2010, I didn't take it. And I am going to give it the next few months to see what changes I notice - hopefully a better mood. I've never been a short tempered or irritable person but it's definitely started in the last 2 years. One way she put it was "We have noticed that the AI's make women more sensitive to EVERYTHING" - which is exactly true in my case, although I would not have thought to articulate it that way.
(She did say she wasn't convinced the AI had caused the bone thinning in my ear but did rx a bone density test so we can compare with the one from 2012 and see if i've lost bone in general.)
It was an emotional day for me - the waiting room was PACKED and some of the people were very very sick. It was just 'too cancer-y' for me.
But today is a new day and I'm ready to start again. I guess that is more or less what life comes down to, isn't it?
Love to all. Amy
ps - I love the name Noelle and am so glad she and her mama are doing well, Geri.
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Geri, good to see you back. You seem to have a lot going on and I hope that it is not too much for you. Please keep us posted on your progress and let us know what the Oncologist says. I am so happy to read that your daughter and Noelle are doing well and that the christening was a happy family occasion. There can never be too many of those. It warms my heart that she brings so much joy into your life.Amy, sending you hugs and hoping that you are doing ok without the AI - please also keep us posted.
Helen, how is the baby doing? Hope you are enjoying your extended family.
We are doing ok; my daughter is up and down and we are spending a lot of time with the hospital and social services working on the best fit for her after she leaves the hospital. Last weekend, she turned 17 and we went away for a couple of days to the beach. We had some challenging moments, but we are learning to deal with them. It was better to be away as she finds her birthday difficult; she said that people who have attempted suicide, do not like to celebrate another year of life. It is so difficult when she says things like that. It breaks my heart. Especially having been through cancer. It can be quite a challenge sometimes, but she is our daughter and we love her and are here to help her through this.
Hope you all have a good weekend, and sending you all hugs as always,
Judy x
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