Ibrance (Palbociclib)
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Hi all,
I have been struggling with something and would appreciate your thoughts, feelings and feedback.
I am feeling very alone and uncared for. I don't have really any family except for a brother out of state who has not called or acknowledged my diagnosis in any way. My mother passed away 9 months before my recent diagnosis. My father passed away a few years ago. No aunts, uncles or close cousins. I have a small circle of close friends. These are the people I love and believed they love me. They are my family. However, they all have husbands, parents,siblings and other relatives very involved in their lives and who are very devoted to them. My friends have always known that my goals and dreams in life have been about traveling. I have done very little of this as the past 10 years I have spent racing my daughter alone and did not have the resources to travel. The last couple of years we have taken some local beach vacations with a single friend and her child who is same age as mine. I wanted to take bigger vacations but she did not want to so I did what she wanted so we could still vacation together. Well since my diagnosis of metastatic BC I have decided that I wanted to spent the time I have left, really living and enjoying life. For me, this means traveling and experiencing wonderful adventures with the people I love and who I thought love me. I want to have wonderful experiences and make some beautiful memories. Mt problem is no one wants to commit to taking a vacation with me! I have talked about Italy so many times (one of my dreams). No one agreed to go. Some pele were like maybe and told me to find out details and let them know and then maybe they would go. Some friends I understand they couldn't travel for certain reasons but others I just didn't understand except they didn't want to spend the money or just didn't want to commit. I am so hurt. I shared how I felt and was very vulnerable in my sharing. One friend said she understood my feelings but clearly was not changing her decision. The other friend said we would work something out but would not commit to any type of time frame at all. I have explained that i hope to live much longer but I don't know what my future is. I can't help but think if tables were turned I would make the effort and do this for them. So at this point, no one will commit to any type of vacation this summer or in the next year. I feel like I want to withdraw from them and I am so angry. They are all I have and have been there in other wAys in providing support but I can't believe they would allow me to possibly get sick and not be able to go or even my own death without them trying to do this for me. I don't think I c an or want to get over this level of selfishness. FYI, they do have some money. They might need to crunch some numbers but they woul not be broke.
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singlemom, I'm so sorry that your friends are disappointing you re. not jumping at the chance for travelling with you, but I have to tell you, I've been married for 35 years, and my hubby is a lot like your friends are! I am constantly bringing up places I really want to go, and he almost invariably squelches my excitement with comments about terrorism or why he'd prefer to do something entirely different, which can be so disappointing and even hurtful when we're thinking we don't know what the future holds. So don't feel like it's a problem only because you're single! I also know that I have in the past been very reluctant to agree to a trip with a girlfriend and leave my hubby at home. I feel guilty, and if your friends are married, similar thoughts may have crossed their minds, as well perhaps limited time off if they work (so then no time to do things with their families), or hassles with child or elder care and other normal Mom stuff if they were to be away.
One thing I've finally come to understand is that we're much happier when we don't have expectations of others, and that doesn't change just b'cuz we have mbc. Yes, it would be wonderful if your friends had immediately jumped at going with you. But the disappointment that they haven't is because of the expectations you had that perhaps weren't realistic due to things you don't entirely know about their situations and relationships.
My other thought is that if you are in good health (except for the mbc, of course), maybe doing some sort of group travel experience -- like a tour planned around a specific interest (i.e. archeology or scuba diving or art or whatever interests you) that isn't too structured -- would give you an opportunity to meet some new friends who not only share your interest, but who want to travel. I personally find it very freeing to be around people who don't know I have mbc because it makes me forget about it more than I do when people are constantly worried about me and asking me how I'm doing and if I need to rest.
One last thought... What about starting a new thread here asking if anyone else is looking for a travel buddy? You might end up with a few new friends who are in the same situation and eager to plan trips!
I totally understand where you're coming from. I just hope these random thoughts might help you see the situation a bit differently and find a way to go and have those soul-filling experiences! (((Hugs))) Deanna
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Really sorry your friends have got you down, singlemom. My first thought is, are they all married? Because I know for a fact that both of my ex-husbands would have literally lost their minds if I would have even thought to bring up an idea like that! No way! Alot of men are real insecure and alot of women will not own up to the fact that it is because of their insecure husbands that they are not "allowed" to go. Then too, some women can't bear the thought of being without their husbands for even one night! (That I cannot relate to!! LOL)
I think Deanna had a great idea about starting a thread!
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thank you for responding Deanna and NicciJ,
Unfortunately I don't understand it. I have a close friend who is married with two you g sons. She goes to the beach with her family for few weeks every year. I would never expect her to be able to do this. However, I have three single friends and that is what is upsetting me. Two are my closest and dearest friends. What hurts me is that I want to experience these wonderful times with them. I love them and want to have some amazing experiences with them before it is too late. I am so hurt. I don't want to hear them tell me they love me. Words are so easy, I have always believed in the actions or effort. Love would of shown effort in my mind knowing how deeply sad and alone I feel. Their life circumstances are different than mine as they all have family support. If tables were turned I really think I would of tried very hard for them. Maybe they just don't get it. Right now I do not want to talk with them. Not to punish, but just that I feel deeply hurt and don't want to fake it around them. I feel very isolated and is this what I have to show for my life.......not one person willing to plan a trip with me after spending this last year burying my mother and learning I have terminal cancer? If I was a crappy person or friend I could understand, but a number of people tell me how kind and supportive I am and how lucky they are to have me as a friend.
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Deanna's advice is spot on. Your friends may have complications to keep them from traveling that are really not about you.
Yes, look at guided tours with groups. Our Parks and Rec. department puts together group trips. There is a group called Road Scholar who puts together group trips-find them online.Your local travel agent can help. Think about a cruise too. Like she said, you can find new friends who love to travel.
I love the idea of starting a thread on here too.
Reaching out to us was a smart and brave first step!
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My best friend just texted me and said she was thinking about our conversation last night and that she would like to plan something special with me! She suggested Hawaii as she is worried about traveling to Europe right now. I was so happy. The fact that she was willing to make the effort means so much to me!!!!!!!!!!!
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great news, singlemom! Aloha!
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Oh, so happy for you, singlemom! It sounds like it just took your friend a bit of time to think about the situation and come up with an alternative to Europe that was more appealing to her. She sounds like a wonderful friend! Keep us posted on your plans.
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singlemom, I am so happy to read one of your friends responded after giving it some thought. Hawaii is wonderful at any time of year, and much less expensive in the off season.
Please don't withdraw from your other friends. Travel can be difficult for people for a variety of reasons. Let your hurt feelings subside but do not give up on your close friends, I'm sure there are many other things they would like to continue to share with you.
I am so sorry for all you have been through in the last few years. I hope life will be kinder to you going forward. And always remember if you ever feel alone that your bco sisters are always here for you too. Sending hugs!
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Seeking your thoughts today....My original dx in July of last year was mets to spine, femur and pelvis. I had a PET in January which basically revealed "no new progression", although it did mention uptake to a fractured rib deformity. I had previously told my husband the week before that I thought I had broken a rib from coughing. I asked my MO about the finding on the PET and he just basically brushed it off as some type of post traumatic injury. Fast forward two months later and I'm still suffering a great deal of pain in the rib area. Return to MO, have a chest xray and he states that rib is fractured and not healing and the fracture was caused by bone weakening in the rib from cancer. I was never told that I had any cancer in my rib, but the radiation oncologist confirmed it when I saw him too!! This has greatly upset me since I went two months without knowing and apparently my MO didn't think this was something that might be of importance to me! Anyway, the above is basically just allowing me to vent.....but my main question is: I had the first of 10 scheduled radiation treatments to the area today to "wipe out" the cancer and help the rib heal. I know that many of you have had or are still undergoing radiation for pain, etc. Have any of you had this type of treatment for a fractured bone and did it work and help the bone to heal? Can I expect the pain to lessen soon? Anything else I should know???
Thanks so much for your insight and have a blessed day!
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Masonsmawmaw, that is very frustrating to have pain that is not quickly investigated. I've had a lot of spine and femur radiation, but none to broken bones. (L1 is collapsed-but can't solve that). I have a tender rib, but not broken. I certainly hope the radiation helps the pain!! (Gentle hug)
Do you get xgeva shots
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singlemom - love the idea of Hawaii with your best friend. Aloha. Please consider starting a travel thread as suggested. I am taking a Uniworld cruise to Spain/Portugal on July 28th bringing my sister. Many people travel single on cruises as it's easy to meet others with like-minded plans to explore, etc, plus you are looked after better than many walking or bus only tours. I've traveled all over Europe, but Spain and Portugal are a first. You are welcome aboard!
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Kaption-yes I do get the xgeva shots along with faslodex and ibrance therapy. Praying for relief soon. (and thanks for the gentle hug
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masonsmawmaw, I'm so sorry about the fractured rib and need for RT. I haven't been in your situation, although I did end up with pathological fractures in other places that required surgery, but I've read your post a couple of times, and just wanted to say how sorry I am that happened to you. When I was having horrible leg pain that literally had me hobbling around on a cane for several weeks, my local onc just shook his head, basically chalking the pain off to the bone mets. My UCLA onc was more concerned, but never mentioned the possibility of fractures -- just ordered an MRI I never got around to having b'cuz my situation came to a crisis that landed me in the ER a few days before the MRI was scheduled. Based on my experience, I've been able to spot similar things going on with others (undx'd fractures) that their oncs hadn't. I don't know why, but pathological fractures from bone mets just don't seem to be considered as the possible reason for pain until someone has a situation like yours or mine, where they are in such excruciating pain, it's hard to miss. OTOH, I hope you will express your disappointment to your onc that the rib mets were never mentioned, as it could have saved you pain and wasted time if you'd been aware you had mets there.
I also wanted to say that quite a few women on the Bone Mets thread who are not on this one have had RT, so you might get additional input there if you want to repost your question there.
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Thank you Deanna, Kaption.lalady1 and jobur! I appreciate your kindness, understanding and support.
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Thinking of you today Singlemom, hope you get a trip started soon. You deserve some fun and travel! Is there a particular place on your list? We are here for you. Some of those other friends sound a little shallow. Have a lovely Easter everyone.
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Hi ladies! Happy Easter for those who celebrate. PET scan day tomorrow!! Wasn't due for one for another 3 months but have been having some pains in my liver area that have not subsided in a month. I have been off Ibrance for 22 days. Hoping I can start back up soon! Wish me luck!
Monika
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Monika- I hope you get good scan results- praying for you!!!!!!
Babs
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Monika-yes! Prayers for good news!!!🙏🏼
A while backsome of you discussed weight gain. At that time I had not gained any weight. Suddenly this month I've gained about 6 pounds. No real diet change. In fact, I've been off dairy (cheese!) for the last couple of weeks, hoping to help my sinus infection. I've been on Ibrance and Letrozole since last June 1. Almost a year! What's up? I have my regular monthly check up tomorrow
Again, Monika- hoping for good news for you!
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Deanna WOW WOW your advice was sensational to Singlemom, everything to the last detail. You are great.
Singlemom yeeh so happy you got at least some satisfaction. Sometimes others really can't understand how a person feels. It just is so. It's unfair of course, but…
Masonsma so glad you are on Xgeva so it should be protecting you. Are they radiating because there is or are lesions or to fix a broken rib? Because from my experience with people that actually had broken ribs, it takes awhile to heal on it's own. Period. Now if there are lesions he wants to treat, I guess that sounds reasonable. It comes down to if you feel comfortable with your care and if all your questions are answered timely. We sympathize with your frustration for sure.They should not patronize and think that it's small or something like that and you would not need to know...Best wishes for you to feel better real soon
Monika fingers crossed!
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Monika, Good luck tomorrow! Hope they are able to find the cause of your pain and that it is something easy to treat. Have they mentioned any other imaging if PET doesn't show anything?
Kaption, Are you still dealing with that darn sinus infection? Hope they find the fix and soon, seems like you have been dealing with this for a while.
Masonsmaw, Sorry to hear about your broken rib, I know they can be quite painful, more so when not dx'd! I don't know much about rads but hope you will find good info from others who do.
Babs, How is Xeloda treating you? Hope you are doing well.
Happy Easter to those who celebrate the holiday!
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Good luck tomorrow, Monika! I'll be thinking about you, praying all is well!
Hugs & Easter blessings to all!
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jobur, yes- still working the sinus infection. Have about another week of antibiotics, then a CT scan from the ENT. He mentioned possible surgery because it's in a weird sinus. Didn't know we had so many. Symptoms have not be awful. Mucinex and neti pot are my best friends.
Thinking of you, Monika.
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Hi ladies... Scan results back in 2 hours... Geesh Johns Hopkins sure moves fast!! All is well with the scan... No evidence of active metastatic disease. I have a follow up with my Onc on Friday... It did mention that there was bilateral lobe atelactasis. Not sure what that is and if I should be alarmed??? Happy for the great news. I am not doing well on AI's at all. Joint pain is becoming debilitating! Anyone use glucosamine? Is it worth trying? Thanks for all the positive vibes!!
Monika
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Fabulous news, Monika! WooHoo!!!!
I swear by curcumin for joint pain. It makes a huge difference for me. It needs to build up in your system a bit, but after a week or two, you should see a noticeable difference. I like both Life Extension and Jarrow brands, although I'm sure there are other good ones.
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Thanks Deanna... I will give that a try!
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Monika, congrats on a great scan
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Monika,
That report sounds great. Bilateral lobe atelactasis means that the radiologist saw what looks to be the collapse of some tiny air sacs in both lobes. I had this when my mets were first diagnosed. The mere thought that part of my lung was deflated freaked me out, but it turned out not to be a big deal. It healed/disappeared over time. Do ask your oncologist about it.
I finally caved in to my rheumalogist's pleading and now take Duloxetine, a generic of Cymbalta, for joint pain. I'm thrilled to tell you that it is really helping.
Tina
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Great news, Monika! So happy for you
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Monika - So glad to hear that you got great news!
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