Hi ladies has anyone refused the Denosumab injection. I have recently been given the news that my single spinal met in T10 is now slightly in T9 and T11.
Since being given the news I am now taking Adcal D3, Felodex injection, but since coming off Letrozole I feel great in myself, no aches or pains I actually feel like the old me . I thinking of holding this injection off until I need it, our lifeās are tough enough so when we can get a positive from a negative Iāll take that.
What are your thoughts and advice please guys xxx *
I have just agreed with my Onc team to extend the interval of Denusomab from 4 weekly to 8 weekly, mainly as I am having low phosphate and low calcium levels on bloods. I take Adcal and phosphate suppl.
Also on Ribociclib and Fulvestrant with extensive bone mets. With pathological fractures in hip, ribs, shoulders.
I believe there is a half dose Denusomab option too, do discuss explore with team.
Iām early days cycle 4 but encouraged as CA15-3 markers are coming down nicely. PET-CT review late November.
All the best to you hope you find best options for your situation
I have Denosumab just once every 3 months . Iām hoping to stick to this . I couldnāt decide for ages whether to have it and delayed the start but in the end went for it, having been told it was the gold standard of treatment but that it was was entirely my choice .
I have mets in sacrum , ribs , some vertebrae and did have a pathological fracture of a rib( which is how I discovered spread of cancer ) . Iām not aware of side effects of Denosumab but with ribociclib and fulvestrant also I have no idea what side effects are due to what - mainly fatigue and some hair thinning . These are such hard decisions arenāt they . I hope you find peace whatever your decision . I think we all do the best we can handle and thatās different for everyone .
I was on letrozole for 5.5 years and felt about 90 years old. Very bad joint pain but I persevered as I didnt want the cancer coming back - who was I kidding!
Iām on Denosumab, Fulvestrant and Ribociclib. No joint pain and I understand it helps with the bone met pain. As I have lymphoedema they decided against radiotherapy as it might make it worse but the Denosumab does seem to help.
I have 4 weekly injections but recently oncologist wanted to reduce this to once every 12 weeks. When I mentioned the pain she told me to stick to 4 weekly.
Initially I had concerns but Iāve not had any issues in the last 9 months.
Hi @SMBW18, you mentioned in your post that āyou are encouraged as CA15-3 markers are coming downā. What are CA15-3 markers and what is considered a normal number? Also, how often is this test done. Thanks in advance for answering my questions. Virtual hugs.
Hi @Gemini111, You mentioned in your post that āyou feel great since coming off Letrozoleā. Why have you come off Letrozole? Is it because you have finished the 5 year treatment? I am ER/PR positive, HER2 negative. I had a mastectomy on Sept 1, 2022; my tumour size was 60 mm; 28 lymph nodes were removed. I started Letrozole last October and this July I started Abemaciclib. I hate the side effects of these 2 drugs. To date, I have not been offered Denosumab injection but a bone density scan has been scheduled this December. I absolutely agree that our life is tough enoughā¦ sending you hugs and wishing you well.
Siggi, this is a blood test marker some have done in the UK and other countries too I believe. Cancer antigen 15-3 (CA15-3) is a protein made by a variety of cells, particularly breast cancer cells. If you are diagnosed with breast cancer that has spread to other parts of the body, or metastasized.
The reference range of serum CA 15-3 is less than 30 U/mL, The highest levels may be seen in metastatic breast cancer, particularly when metastases to the liver or bones exist. However, CA 15-3 can be low or absent in all of these settings, since not all breast cancers produce CA 15-3 or early stage breast cancers may not produce detectable CA 15-3 levels. Thus, normal levels do not ensure the absence of localized or metastatic breast cancer.
Elevation of CA 15-3 levels can also be seen in healthy individuals, in benign conditions, and in other malignant conditions. However, CA 15-3 levels tend to remain relatively stable over time in benign conditions; thus, elevated levels need to be interpreted within the context of the patientās history and physical examination, diagnostic imaging, and laboratory workup.
My blood tests are every 2 weeks, I am early metastatic diagnosis - 5 months
Hi SMBW18
I am post double mastectomy (Jul '22) - invasive mucinous in right, invasive lobular in left. That was followed by left axillary clearance (and Iāve developed the dreaded lymphoedema for my trouble), radiotherapy on left chest wall, and Iām on Anastrozole AI (struggling), with 6-monthly zoledronic acid infusions.
I was wondering, did you only get access to regular tumour marker blood tests after developing mets? I am trying to get them agreed for me as another āearly warningā measure IN CASE of recurrence / mets. Have you had any conversations around whether they can be agreed after only primary breast cancer? Lobular breast cancer is SO difficult to detect before it becomes advanced that I want to be as proactive and vigilant as possible.
(By the way, have you heard of the Lobular Moon Shot Project? It has a very informative website, particularly its 1-hour docu āMy Journey With Lobularā).
Wishing you all the best.
Hope you can see my reply to SMBW18 as it may be of general interest.
I have to ask (because of your uncommon name) are you the gospel singer āsitterā I met on Friday at a portrait painting competition in West Sussex?
Wishing you all the best.
Thank you for you response I really appreciate you sharing your treatment and suggestions I have an appointment with my oncologist 7/11 so I think I will discuss my concerns. Keep well and thanks again xx
Hi
Unfortunately I have gained two more mets to my spine, so treatments had to change.
I was taking Abemaciclib and letrozole for just over three years with scans showing stable every 6months, it was mixed emotions because although I hated the Letrozole as it made my joints ache and walk like a elderly person I was frightened to have the treatment what was working taken away. I learned how to manage the Abemaciclib on 100mg dose quite effectively (although did have a couple of disastrous times).
My new treatment obviously comes with its own symptoms Fulfastrant is a very uncomfortable injection one to each buttock so very uncomfortable after as it feels like your sitting on small rocks alongside bruises not a kind treatment, but once this subsides i actually feel like a normal person.
Each of our treatments are slightly tailored to our needs but Iām sitting on the fence with Denosumab (bone injection) as I donāt want to be crippled with joint pain,again!!
I will keep the updates going for other peopleās information. Xx Hope this helps xx
Hi @Gemini111 , so sorry to hear about your Mets. It concerns me that despite being on abemaciclib, mets still happen? As indicated , I am also on abemaciclib and have often wondered whether it is worthwhile taking Abemaciclib given the adverse side effects. Isnāt abemaciclib supposed to reduce risk of recurrence? I guess one can say nothing is guaranteedā¦.Sigh. Yes. I have read about fulvestrant injections. I follow Dr Liz OāOriodanās (British breast surgeon) YouTube channels. Sheās also on fulvestrant injections. Thinking of you.
Hi everyone,
With regard to denosumab, I took this every four weeks for about six years. My bone mets remained stable and didnāt cause pain. I had to stop the treatment however as it effected my jaw. I was then taken off anastrozole at the same time and changed to fulvestrant and palbociclib. I remain stable, ātouch woodā. I often feel quite tired and weak but otherwise fine. I also have arthritis in my right shoulder, hands and knees. My hair is also very thin but it started to thin when I took anastrozole. I do however consider myself very lucky to have lived so long as my original breast cancer was found in 1995 and wasnāt rediscovered until 2015 eight and a half years ago.
Apparently problems with denosumab are more likely the longer it is taken.
Best wishes to everyone.
Windflower
Thank you so much for sharing your experiences. You are doing amazing Iām so pleased for you and us other ladies when we hear such incredible news that us secondaries are doing so well on the current drugs available.
Thank you again for sharing, youāve made me feel better about treatments ahead. Xx
Hi @windflower, I second Gemini1111ās post. Thanks so much for sharing your experience. I have an overwhelming fear of recurrence - I think about it everyday, wondering when will the beast return. I feel so encouraged to hear such positive news from you. However, you mentioned in your post ādeonsumab affected your jawā. If I may ask, what did happen to your jaw? I havenāt been offered any Zomeeta or Zoledronic Acid yet but I know itās on the list of med to be administered to me. I have a bone density scan scheduled for this Dec. I guess my onc will wait for the resultā¦ Thanks again for sharing. Strength to us all.
Hi Siggi,
It was in 2021 in the middle of Covid. My gum felt peculiar. Dentists were only seeing emergencies. I spoke to my dentist on 11/01/21, was given appt for 9/03/21! He said problem was with crowned back tooth but he couldnāt remove it because I was on denusomab. I was referred to Maxillo-facial and had to stop the denusomab to have the tooth extracted. The tooth was extracted on 28/04/21 but the surgeon had to remove a bit of the bone as it wasnāt right. I had stitches in my gum. Some time later the wisdom tooth next to it was removed - this was decayed - and the bone tidied up. I now have a bit of a cavity where the two teeth were so eat on the other side. I havenāt had any more problems but was taken off denusomab permanently.
I understand that you canāt have any invasive treatment whilst on palbociclib either, just straight-forward fillings.
I donāt know if this helps, I suppose we all have to make our own decisions with the help of the profesionals.
Best wishes
Windflower
I had been taking Abemaciclib for a little over three years so it worked really well for me until recently. I have had my spine biopsies retested which have shown to be PIKA positive so have been offered Piqray but I have asked to have a rest and agreed to continue with the Fulfustrant and Prostap injections until I have a scan after Christmas. Piqray probably will cause itās own issues which will make me start Metformin to combat those issues. Itās just one tablet to combat another tablets symptoms. It get very tiring
. I thinking of holding this injection off until I need it, our lifeās are tough enough so when we can get a positive from a negative Iāll take that.
I have an appointment with my oncologist 7/11 so I think I will discuss my concerns. Keep well and thanks again xx
