Mum recently diagnosed
Hey all, I've joined this forum in the hopes of connecting with others. My mum is 69, diagnosed with breast cancer 2 months ago and now has been diagnosed with metastatic BC in spine and possibly lungs (they arent 100% sure on the lungs) as the spots are so small. Shes started oral chemo and hormone therapy today and will see the oncologist again in 5 weeks. She seems to be handling it well so far but she's not feeling sick or anything yet so i guess time will tell. Im sure its going to be a long journey and I'll be here to support her every step of the way. I currently live with my mum so im glad Im here to be there for her. I just wanted to pop in and say hi.
Abemaciclib and Provera
Hi @hellosunrise and @wendy55. I was just about to reply to your post Wendy on the general site which I only recently joined but when my membership of this metastatic group came through and I saw @hellosunrise sunrise's post I thought I should reply to you both. My name is Penny and I have been on Abemaciclib for just over 3 months. On the 200mg dose the diarrhoea was terrible in spite of the Gastrostop and I landed in hospital with dehydration and in Atrial fibrillation and needed IV fluids overnight. The 150mg was a bit easier and I used the gastrostop more earnestly but it still got to the point where I had no appetite, was losing weight, anaemic and neutrophils down to .7. So I had another break from treatment then was started on 100mg 5 weeks ago. The diarrhoea is no longer a problem and my neutrophils are low but ok. However with all the breaks in treatment the visible tumours on my chest wall seemed to be increasing and I asked for a review by a radiation oncologist, but he said that I couldn't tolerate a third round. So I was about to start on PROVERA which you were interested in Wendy. I gather that as a Progestin it interferes with the action of Oestrogen somehow. However in the last 2 weeks I think the 100mg dose is starting to work and we are going to give it a bit longer before we give up and start the Provera. I am lucky to have visible tumours that help to measure my disease (as well as bony mets) and they have been more useful than the cancer markers on the whole. You wondered why I was able to get access to the Ribociclib Wendy in spite of all my treatment and I am sorry I can't tell you why. I had to have it with the Faslodex in spite of having progressed on that when I had it alone self funded for 3 months. So you know @hellosunrise, I am 12+ years and hoping for some more so hang in there. I have put my profile up on the general site but will add my story to this metastatic group. As Wendy says there are a lot of drugs out there and they often seem to be going back to older drugs like the Provera and even Tamoxifen for those of us who have had a lot of hormone and chemo treatment. Before they came up with the Provera for after I give up on Abema I had been told I would probably be started on Liposomal Doxorubicin chemo.
Fulvestrant Injections
Hi to the ladies that have recently started on Fulvestrant Injections. How are you going ? I have been having the injections since October and my tumour markers have more than halved. My oncologist is very happy with the results and she feels that my liver mets may have shrunk. I'm due for scans early January, so all will be revealed. Hope you all have a happy Christmas and stay well.
Recent MBC - sternum
I was diagnosed with MBC on 5 November, (first diagnosed with BC in August 2016). I have been told that it's detained in the sternum and no other areas of the body and it is thought that it was there when the breast tumour was removed in Sept 16. The suggestion is that I stay on Tamoxifen or as I am premenopausal that I have my ovaries removed and I would then have access to either Palbociclib or Ribociclib. I could have a monthly ovarian suppression injection rather than have them removed. I am currently looking into the options presented and will see the medical oncologist in two weeks time. I am just wondering if there are any others here on this network that have experienced the same thing?
Ribociclib/ letrozole/ denosumab side effects
Hi all, I ws wondering if anyone else has QT prolongation and low neutrophils and now I have a bad infection in my jaw so my onc has stopped everything except letrozole, I am pretty upset because my tumours had shrunk and my markers were really low, now I have to wait til the dentist fixes my mouth and I'm worried that all my progress will be lost. I am not due any scans until the end of June, feeling pretty crap at the moment. Thanks for listening. What makes all this worse is that apart from the infection I feel really good, just tired.New to sharing
Hi all, first timer here I was first diagnosed May 2013, 6 rounds of chemo, 30 radiation treatments, then Tamoxifen til 31st Oct 2017 when my world fell apart, bone , lung, and a few other places mets, nail inserted on 24th Nov, lucky to get a place on the ribociclib compassionate access program, combined with letrizole and denusomab, mixed results so far. I am still trying to get my head around this. I am so tired most days and pain is my new normal. Anyhow, just wanted to say hi, I usually keep pretty much to myself but it's good to know I'm not alone.
Migraine
I am currently on tamoxifen after recently being diagnosed with Mets. I am 49 and this was my first diagnosis. As I am not post menopause my Oncologist has put me on this medication and a planned surgery to remove ovaries in next month. I have developed a horrible migraine slowly over the last 2 days which has worsened considerably. I usually get a migraine when I am due for my period . I am trying to get through to after hours help lines with no luck to see if I can take pain killers . Did anyone experience migraine while on tamoxifen and if they were able to take stronger pain killers other than panadol whchbdid zilch for me . I don’t know whether to go to ICU or if this is extremeNew to the group
i live in a country town where they have no groups for Metastatic breast cancer it is more first women that have been early diagnosed. So when i was told that group was on line i was really pleased reading so many out there are the same and your not alone. Was diagnosed in 2009 with stage 3 and 19 lymph nodes taken out that were cancerous . Went on Tamxophine got blood clots so then went on Admara and Femara for a short while after . Then on May the 1st 2017 went for blood clots new they were there to find out have bone mets and liver mets.The bloods clots were telling me it was back as in August the 2016 i had ct scans done mri and whole bone scan and everything was clear.So i am happy the blood clots yelled out would of not known.I did 8 months of chemo and now on femera and Kisqali . Have a few scan done in the last 12 weeks as ca counts went up but scans show lung mets and bone mets stable and blood test good.Mri good. Get anxious when time to go and find out blood test restults as i am going next Tuesday.Does any one feel the same dont understand ca counts would rather do scans as they tell the picture.
Liver mets.
My sister was put on arimidex after being on gemza for liver mets. She had good response to the gemza with only 1 liver met left. Today she got scan results and the outcome was not what she wanted to hear. That single met has almost doubled in size and now has extensive small mets through out the liver. Has anyone been through the same and what treatment plan did the oncologist put you through. I am beside myself at the moment as i can not get my head around this.
