Hi everyone and Happy New Year. I hope everyone had time with loved ones this season. One quick off topic question. Does anyone know if Barb's grandchild arrived? I think of her often and know she would have loved being a gram! I miss her.
I've been away for awhile dealing with the frustration of unseemingly unstoppable liver mets. Everolimus didn't work. Xeloda failed after 6 months. Three months of Verzenio were the most miserable 3 months of my life and resulted in 3 new lesions.
After 60 days of fulvestrant, the discomfort I'm feeling in my upper right quadrant is almost certainly further progression. The panic attacks and nightmares from the needles has significantly changed my personality. I have become mean and aggressive. I don't even know myself. Honestly if one more person says, "you just have to do it" or "it's no big deal".... The anxiety is unrelenting.
My oncologist has suggested we not wait another 30 days for a scan, so this week it is. Wonder what then? I'm too tired to speculate.
I do have a question for the group. My mastectomy 11 years ago revealed both ductile (7mm) and lobular (5cm) masses. No one...or no biopsy report...I've seen distinguishes the current lesions as one or the other. Scan after scan I'm always surprised nothing is found in my gut. I have pains and GI symptoms the scans don't explain. Now I have a rash on my scalp. I had one 3 years before diagnosis but it disappeared after I began treatment. A woman on another platform mentioned she had been diagnosed with scalp mets and had a rash on her scalp. Her disease is lobular. Given that lobular is radiographically occult in many cases, I'm concerned.
Has anyone experienced a rash with scalp mets? Do I really want to look under the lobular rock? Ugh
Thank you for reading this long post and thank you for all the sweet and supportive messages I've received during my hibernation. I'm sorry I didn't respond.
Much love, Andi
Written by
Arisgram
To view profiles and participate in discussions please or .
Hi AndiI am so sorry to hear that you have been suffering so much.
I have been feeling a bit of a pussy lately when having my usual injections, but you have been going a through so much more, it is a good wake up call for me.
When you go through disappointment after disappointment it must be so hard to feel positive and dig deep for the fight.
I have no advice about scalp mets, although I did have a strange lump on my scalp (we don’t have head scans in the UK). I put Frankincense oil (mixed with a carrier oil) on it and it has decreased to almost nothing.
I am so sorry I am not much help, but please know that I am thinking of you and hope you can get some more answers to your dilemmas.
Clare, thank you. Your kindness means so much. I need to apologize for the whining. I certainly have it no worse than anyone else here. I'm just unable to cope for some reason. I'm going to do better!
How have you been? Did you have a nice holiday? I hope so! A little holiday cheer is good for us! Much love from Alabama. Andi
Don’t talk rot - you have been through the mill and should moan, that’s what we are here for. Your treatment has been so delayed for the open wound, and that is what you wanted to get sorted ages ago. Then your liver kicked off. You kept getting kicked when you were down.I took a good bit of time off at Christmas and don’t go back to work until Tuesday. I have been very lazy and am looking forward to getting back to a routine.
I had a 4th vaccine yesterday, and boy did it knock me for 6. I have literally slept on and off for 8 hours today. It’s now bed time and, of course I am wide awake.
Hope I feel better tomorrow as I need to start packing up the house ready for our move which we think will be in a few weeks. The house renovation has come to a bit of a standstill (waiting for a very elusive electrician) so we are going to have to move in with family for a while. Ahh the joys. I know you have not long completed your renovation so you can relate I am sure.
Chin up chicken
Clare
Andi - Sorry you're dealing with so much. I don't know enough to answer your questions about scans. I found out I have scalp metasis about 3 months after my MBC bone diagnosis in June 2018. Fortunately, the Ibrance/Letrozole combo has kept it in check.
As for your understandable anxiety, please let us know if you talked to your medical providers about giving you something to help. I take 1/2 Xanax when my anxiety spikes. Others find cannabis helpful to regulate their moods. I don't manage THC well. I don't like the high sensation it gives me. I found a low THC tincture that helped a little. It makes me a little cotton mouth so I rarely use it any more. Perhaps it will help you though. Good luck!
Oh, one other thing: I learned that they give a numbing cream to kids before injections. I don't know why we don't get that offer! I tried it for my last bone density infusion. I didn't notice too much difference. Again, we are all different so please ask about that too.
Thank you for your suggestions. I think I'm a lost cause on this needle thing.
My poor oncologist has gone above and beyond trying to help. My first attempt to go through with the injections involved lidocaine, prescription prilocaine, ice packs and 3mg of ativan. I couldn't do it, and my sweet doc ordered it wasted. The second attempt, I added a pretty sizable dose of THC. I've made it through 3 sessions but the nightmares and panic attacks persist. Unfortunately, it isn't a pain thing. It's just a stupid irrational fear. Therapy nor hypnosis have helped.
Another obstacle reared it's head today. I told the clinic to cancel everything while I weigh my options. As I said to Clare, it isn't that my situation is so bad. It's just I don't have the backbone to handle it.
I hope you're doing well and have big plans for the upcoming year. Thank you again for your kind words. Much love, Andi
I gently disagree with your statement that your “backbone” is deficient. Good grief, you (and all of us) deal with a lot of crap due to MBC. Do not undersell your tenacity. You are a star and a fighter. Remind yourself that you are a good woman dealing as best you can.
You are entitled to your feelings, your frustration and your reluctance. None of this is easy. Bravo to you because you are getting up each day, putting one foot in front of the other, & doing as much as possible under demanding circumstances. Please, give yourself great credit for that.
I read recently about how positive “self talk” is helpful. With this approach, we don’t inadvertently reinforce negative self image. I saw this approach work for a good friend who broke up with her boyfriend of 2 years (Never cared for him much anyway.) Yes, her circumstances are different from ours, but the approach she eventually adopted may give you some well deserved credit.
My friend got in the habit of answering questions about why they broke up by trying to lightly joke she wasn’t so easy either. I recognized that she said this to deflect from his anger mismanagement and how it ruined their relationship.
After a few times hearing this, I lovingly reminded her that she was not the bad guy in the relationship. She did not need to undercut herself.
I encouraged her to give a more neutral reply, if at all, so she doesn’t inadvertently perpetuate herself as bad at relationships. She is a genuinely kind and caring person.
My friend found that using positive self talk helped. Sorry if this is TLDR. I mention it because it helped my friend. I hope it helps you.
You have plenty of backbone! Kick butt & take names my friend!
I, too, have lobular and ductal. The lobular went to my stomach after having had bone mets for 6 years. I’m assuming the bone mets were ductal? I’m on my third onc and he is the only one who has ever talked about a difference in my cancer(s) and said the lobular tends to favor the digestive tract. Hence, my stomach Mets. Not sure why it took the third try to get actual information! I had tons of questions for my second onc and she didn’t like that very much. Said most people don’t want to see their scans etc. Hmmm. Good luck to you!
What do the mets to the stomach feel like? My scan shows nothing; yet, I feel very uncomfortable at times when bending over, like there is something in my gut.
BTW, I have extensive bone mets, adrenal, spleen, sternum, lymph's, etc.
Well, in hindsight, at first my appetite decreased and I lost 17 lbs. over 3 months. I just thought it was decreasing due to age (65), but after feeling a tiny bit nauseous for a few months, I started vomiting everything I tried to eat. Lost about a lb. a day and was losing blood in my stool. I became so weak I couldn’t sit up. After weeks of this, my primary doctor thought I might have an ulcer, so she’s the one who ordered the endoscopy. My stomach was full of tiny red bumps (tumors). Of course, since it is inside the stomach, nothing shows up on a CT. I needed two blood transfusions and started on Ibrance and Tamoxifen and now feel good and my second endoscopy about 4 months after the first one showed my stomach looking pretty normal. So grateful for these meds.
Isn't that funny? I have several friends who know no more about their treatment then when they are to swallow a pill. I think I drive my doc crazy with all my "input." That said, I haven't been able to pose the lobular question. I'm not sure he even realizes I had a primary lobular mass. I guess if I found an effective lobular treatment, I might pursue it.
I'm so sorry you've had such a difficult time with the stomach mets. How completely miserable. Hopefully you will continue to respond well to Ibrance for a long, long time.
Happy, Happy New Year! Thank you for taking the time to respond. I was having a pity party! Better now😊 Andi
I’m sure we all have a pity party from time to time. As long as we keep enjoying and moving forward with life, that’s the important part. Best of luck to you!
I am so sorry that you are enduring such horrid times with this fxxxxxg cancer. ! am sending loving thoughts to you and will include you in my prayers on Sunday, next.
Thank you very much for the prayers. I need to pull myself together and get on with things! I certainly have a terrific group of role models, you included, to remind me to be tough and resilient! I'm going to do better!
Big hugs to you from Dixie! Thank you again for being so kind! Andi
Hey Lesh, Thank you, and shame on me. I've let myself get bogged down in this mess. It's time to get back to just getting on with things.
Here's to 2022. Who knows what's around the corner. I hope lots of love and good things for each of us regardless what this dreadful disease gives us. Thank you for reaching out. Much love, Andi
Have been wondering about you and your beautiful new home. Wish you were feeling good and not dealing with so many health issues. My original cancer was ductal, so I don't know anything about lobular cancer.
As I remember you were concerned about your son and grandson. Having so many worries isn't good. I am praying for you to have assistance with your worries, so that you will have peace and calm in your life and be able to focus on what is most important to you. Anxiety makes
everything worse and it sneaks up on us.
Wishing you the very best and a stress-free life. Blessings, Hannah
Hi Hannah! How have you been? I'm sorry for dipping out. Not my finest hour.
The house is big and drafty, but I distract myself decorating and gardening. I can lose myself for days. The steps are probably a blessing in that they keep me moving! It's goid to live in town after 25 years of commuting. Should you ever find yourself in Alabama, please come by for a tour!
Unfortunately the situation with my son remains heartbreaking. It's been 7 years since we've had any contact. He turned 30 Christmas eve. My grandson is 6 and a half, and they've refused my visitation since COVID. I miss them more than there are words. I hope that my son's journey is providing him what he needs. It's all I can do. Thank you for remembering.
You are right about finding peace in our lives. Thank you for your well wishes and I wish the very same for you. Have a bright and happy 2022, Hannah. Much love, Andi
Hi Andi, wishing you a Happy New Year too and hoping it's a better one for you. I'm sorry it's been a rough time for you. I hope you know we all support you and wish you all the best. Xx
Sometimes it can all just get to be too much . Try to deep breathe and take baby steps . Hopefully your scans will give your oncologist a better treatment plan . Luann
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
New Years Prayer for us all🙏
New primary plus first progression 
Stunned, scared, sad, but grateful and happy to be here! 
uptake increase one spot only
One year journey 
