I am feeling weary today, but still holding my resilience in tack. Feeling for myself and everyone so much right now..
First situation: I am wondering if anyone else has had three primary cancers. I have now been diagnosed this week with a carconoid tumor in the lung. We are having surgery to remove it. So that is, now, endometrial, breast and lung cancer..
None of which is metastatic though I have been on this M.B..site as well as the B.C. site, because the understanding here has helped so much.
The second situation is that because of having a problematic degree of AIMSS (Aromasin Induced musculoskeletal symptoms) I can not longer take the medication. I also am unable to take biosphonate infusions for the developed ostopenia because of ongoing dental/jaw conditions. My onc and I will talk about what we can do... She wanted these medicines/infusion as protection from becoming metastatic to lower estrogen levels and strengthening the bones. Any suggestions?
Thank you .... Lots
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Mary115
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hi Mary.wow.....that is a lot going on for you. difficult to manage one type of cancer....but three at same time sounds overwhelming.....metastatic or not!
one thought did come to mind. although this has probably been discussed already between you and your oncologist. but what about Faslodex (fulvestrant) as an estrogen blocker? it works from a different action so while it is not an aromatase inhibitor....it is still an effective and well tolerated (by many) estrogen blocker? I would think that this med should not worsen your AIMSS symptoms. maybe worth discussing. or perhaps it already has been.
that's all I've got. except wanting to say i hear you and my heart goes out to you.
Carole, Thank you sooo much. I have not seen the onc yet about replacement or alternative treatment to aromotase inhibitors or biosophonate so definitely will research Falsodex. This is very helpful.Although I have regular visits with the endometrial cancer, There has not been a reoccurance. I am exactly three years out from the breast cancer and active treatment. But we need to deal with the results of the aromotase inhibitors which is life changing not in a good way.. And the new carconoid tumor in the lung is due for surgery.
So , I want to thank you for the Falsodex suggestion, and your understanding. I appreciate you saying that this is not metastatic b.c. and I still fit here. They do not have groups for triple cancer recovery.. You helped.. Am smiling.
good to hear that you found Faslodex suggestion helpful. and very happy you are smiling!
if you find it helpful and supportive to be on this site....then you belong. my thoughts. we are here (or I am) to both give and receive support, and gain knowledge....no matter where you are on the cancer journey.
I do remember your AIMSS symptoms are a huge challenge to your mobility. you have/are going through a lot. so sorry to hear of the newest lung CA.
you are already an active, participating member of this group.💛
Hi, personally I just have MBC but in my work I come across quite a few people with synchronous or consecutive primary cancers. Hopefully none of yours metastasize and the lung tumour is easily resectable. I agree with you about effects of AIs, I had horrendous carpal tunnel on my lymphoedema arm from exemestane, joint stiffness, vaginally dryness. However it did work quite a long period. Good luck!
Cantrarielle, I appreciate your letting me know of your wording of " Synchronous or consecutive primary cancers". And that you have met others who have dealt with this situation. Good to know. I also, appreciate your understanding about the sometimes side effects of AI's. In many or most cases I suspect it is well worth taking them despite the side effects.. Unfortunately, in some situations the resulting Aromotase Inhibitor Induced Muscular-skeletal symptoms outweigh the benefits.
Feeling for you and with you in the joint problems. In your corner, together
Mary, I am a cancer four-peat....summer 2010 melanoma in one spot in the middle of my back, surgery there and two sentinel nodes. But beyond that, not even a spot to monitor on me.
Fall 2012 breast cancer left side, lumpectomy, sentinel node, breast reduction both sides, radiation and letrozole.
Spring 2019 MBC with one spot on hip bone, super targeted rads 3 sessions, Ibrance and Faslodex. Residual from that, left dropped foot, I kid you not.
Then routine PET/CT for MBC showed thyroid cancer which we monitored on right side for a bit and then surgery Nov 2020 to remove. No addl treatment or meds required. Seeing endocrinologist for one more visit next spring.
Luckily I had one of the top docs at Sloan for first surgery, and for each addl was treated with one of their top people.
Crazy, but through it all I feel lucky! My followups are with skin, MBC oncologist and endocrinologist.
Wishing you coordinated treatment...and no addl cancer sightings!
Oh Avidbooklover. Me too to the avid book reading and to your wise words that I can relate to: "Crazy, but through it all I feel lucky! " Me too. So true.
Oh, Mary, my heart goes out to you! 3 different cancers sounds overwhelming to me! the only thing I can think of to suggest is getting a second opinion evaluation, or evaluations, at one of the Comprehensive Cancer Centers. Those are the top ranked cancer centers in the US, mostly affiliated with university medical schools. You can go to their website and find a list of the CCC's by state. If I were in your shoes, I would probably call the closest one and find out if they can set up appointments for you with oncs who specialize in each of the cancers and then have them consult one another. Your own onc would probably think this is a good idea--get some of the best minds in cancer treatment thinking about what might be best for you, plus they might appreciate getting samples of your DNA to see what they can learn from it! Please keep us posted, and know that we "get" what living with cancer is like. Sending love and prayers.......................
Thank you PJB. I have Dana Farber as my primary cancer location. Some surgeries may be done more locally when covid numbers rise and distance makes more difficult, but I like having them providing the oversight. How I appreciate the heart going out to me too. All the organizing and medical insurance challenges also seems overwhelming. So, I doubly appreciate and feel your heart contact and circle that heart connection around back to you .. and extending outward and around again!
It has some complex but also straight forward easy to understand explanations. I'm glad to have read it and am going to increase my walking time.... I hope, lol.
PJB.. Omigosh, this article is very informative and helpful. Thank you so much.. Puts into relatable language reactions which I had intuited but did not have the wording for.
Hi Mary- I don’t have three primary cancers I’m “just” dealing with bone Mets. This journey is overwhelming some times. I recently had progression, Dr change, and change in med. it’s a lot.
I hope you are getting support from your teams and family and friends. It’s hard some days to keep going—- but you can take one step forward every day! Sometimes—- taking a shower is all I can do.
BluHydrangea Oh yes, and a shower and washing hair on the same day is a bigger achievement.
I like your reminder about getting support .. I am slowly learning to accept that support and beginning to learn to even ask for it. As you write "One step forward every day".
Admitting that I get weary and asking for assistance here, was a step for me today, and my appreciation for all the care, and competency given here.
Being vulnerable is so hard. I went to a new counselor last week. Listing everything that’s happened in the last three years…. Is he asked me how I handle emotions… I blurted out..” emotions are a waste of time!”
I guess I am so good at”pushing through” I forget to Feel. I guess I have some lessons to learn about being vulnerable!!!!
You are going through much more than most of us with MBC!! I am impressed by your stamina.
I was going to suggest calcium supplements to strengthen your bones but I just did a little online research which indicated that calcium supplements are not a good idea - much better is to ensure you consume calcium in your diet: (hopkinsmedicine.org/health/... )
Besides dietary calcium, I hope you are seeing a physical therapist for suggestions about exercises to maintain the mobility you currently have. Sometimes, we need encouragement to do what we know we should....
Thanks Hazelgreen. I like your suggestion about Physical Therapy. Physical therapy is on hold until the results of an MRI and possibly a spine specialist is seen ... but PT or OC is my aim. In the meantime I walk as much , or little , as I can and do gentle chair yoga. Onward!!
Hello Mary--I am so sorry to hear of your 3 cancers! One is enough to deal with--I too have MBC. I want to add that I too had debilitating joint pain from anastrozole. I had trigger fingers and thumbs, De Quervain's, pain in most joints--knees, hips, shoulders, It took 6 months, but it did all finally resolve. The last bit of inflammation was resolved after a cortisol injection in my knee--I think it also calmed the inflammation in the other joints. A rheumatologist told me that the AI's inflame the synovial membranes around the joints--and the same membranes that surround the tendons. He said that about 50% of those taking the drugs get these symptoms. I also went on the fulvestrant (brand name Faslodex) injections which blocks estrogen from attaching to the cancer cell receptor. Since you are not MBC, tamoxifen might work well also. The very best to you! Kay
LadyKatarinaThis is so helpful.. I will definitely use this information as this has not been addressed by my oncologist yet. I also have degenerative disc changes and reversal of normal cervical lordosis.. After reading the responses here I just found this study.. Hopefully, I can get some results soon. It may somehow relate assets.researchsquare.com/f...
I cannot express my gratitude enough to you and everyone here. You help to keep me on track and keep on advocating for myself.
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