Breast Cancer Now Forum

Hi - haven't posted for a while as had a spell in a Macmillan Hospice for symptom control when my platelets level fell to 9 which is apparently very low.... Apart from the appearance of  bruising externally, there was an internal  bleed behind my right eye so I was given a platelet transfusion. We'll see What Happens Next....   ... View more

Hi to all looking at this thread! Thought an update would be in order - and also a couple of questions some may be able to answer.....   I've now had three transfsuions (6 weeks and 4 four weeks apart and looking like another coming  up at 4 weeks apart). They do make me feel better. However - the last blood test also showed that the marrow infiltration/failure hass caused my platelets to have dropped from 70 4 weeks ago to 30 now. This is apparently of great concern (norm is around 150) as it can lead to spontaneous bleeds either internal (brain and stomach were mentioned) or external (I'm to be cautious of bumps and cuts).   I notice that one of you ladies has had a platelet transfusion. I cant seem to get a straight answer as to why this should not be so for me too? I get the impression that it would be futile because platelets live for only a week so I'd be in hospital all the time ???? I have been taken off Arimdex and Meloxicam as they can affect the "stickiness" of platelets and reduce theeir ability to help with clotting.   Best wishes to all,   Haxted     ... View more

Hallo Mildred - Just a thought - I wonder if the "close monitoring" includes checking for a possible need for more blood transfusions? I found that when I was so tired out from the anaemia, I couldn't think straight or make decsions with any degree of confidence....I'd recommend trying to focus on enjoying this break from treatment without it being clouded and lost by worrying about the meeting with consultant in 8 weeks time. Wishing you all the best.      ... View more

Hallo. Just had my second transfusion (3 units this time) yesterday and it made me wonder how you were doing Mildred since finishing chemo? Did your medics put any suggestions to you for going forwards?   I made 6 weeks between the two though with haemoglobin levels at 7.6 on Thursday it should probably have been a bit sooner! Just very mindful of being told that the longer the interval the better!   Having these transfusions has really opened my eyes to the kindness of strangers: instead of seeing three bags of blood go up I was aware of three total strangers who unselfishly gave their time and blood to help me. What heroes....     I'm doing okish. So good to have a break after 5 years of continual treatment. Dont know what the future holds -  just making the most of "now".   Best wishes to all x          ... View more

I have had radiotherapy treatment for pain from spinal and hip mets with good - though not immediate - results. And the pain can become a bit worse before it gets better so keep up your pain relief for a while.    Nerve pain/numbness from skull mets pressing on nerve to jaw has not been helped by anti-inflammatories/paracetamol but by drugs specifically aimed at nerve pain. These have included amitriptaline (primarily an anti-depressant) Gabatpentin (primarily an anti-epileptic) and now, Dosulipen (also primarily an anti-depressant). I chose not to have rads to head at this stage due to proximity to brain and because the pain/numbness is not unbearable (I can and will change my mind if this changes!)    Hope your treatment brings some relief.   ... View more

Glad you made that decision! It makes me happier that I made the same one! I have skull mets and some are now pressing on the nerve at base of brain causing numbness in right lower lip, chin and gum (feels like a dentist's injection). It's odd, annoying and sometimes I chew the inside of my cheek by accident - but not unbearably painful. My oncologist offered skull radiotherapy but the radiologists were unwilling to take it on due to proximity to brain etc so I didn't push it. If it becomes a real issue, I may do but until then, I'll live with it!   ... View more

Yesterday's oncology appointment went ok - they didn't try to dissuade me from my decision not to have more chemo - said it was a good call but that I could change my mind at any time. I am to have blood tests every two weeks to determine when (if?!) I need further transfusions - the greater the interval the better apparently.    Doing a bone marrow biopsy would be uncomfortable (which I knew) and would not change the treatment options given the definate marrow depletion - so I've not asked for one.     I've also agreed to go on Arimidex (the only Aromatose Inhibitor I haven't had) for a few weeks  "just in case" it might slow down tumour marker increases. We'll see! Everyone's different and maybe it'll be a miraculous pill for me!    Feeling pretty peaceful and wish the same for others finding themselves in this situation.        ... View more

Hallo Moonbeam   My decision was to decline further chemo...... Many reasons to rationailse it but for me, the main one was that that's where I found peace.  I haven't 'given up' as such but am not led to undergo any more aggressive treatments. The prognoses given by docs are extremley well intentioned - but are based on statisitics - and we are all different! So I shall continue with all pain relief meds for bone pain plus zoladex and denosumab and have transfusions as and when required and see what happens. I see my oncologist on Monday and have a whole bucket-load of questions for her! I'm glad to hear you're doing okay on paclitaxol!   Mildred - I hope you get your treatment break and have space to enjoy it.        ... View more

I completely understand about not making any life-changing decisions whilst "coshed" by treatment or symptoms. I haven't had chemo since November when Capecitibine stopped working (after 11 months) but the side effects of getting pain relief tweeked and getting used to them and then the dizzyness and confusion of the anaemia would have made any decision about chemo/no chemo very unstable! I feel much more in a place to make a decsion now and, Mildred, I hope you will be too when it comes to it. The info received here has also helped greatly - I feel I am making an informed decsion rather than one based purely on emotions..Thank you all.    ... View more

Thank you for responses! I do feel much brighter after Thurday's blood transfusion and clearer headed to make the decision regarding more chemo or not.    Mildred - could I ask a couple of questions? Was an injection of the hormone Erythropoietin (spelling?)   ever suggested as an alternative to transfusions? I figure it might only be suitablle to trigger blood cell procduction where there is a full quota of marrow present but I'm no expert! How many transfusions have you had so far at 4-5 week intervals? Did you have a bone marrow biopsy to confirm presence of cancer or was it deduced by scans presenting diffuse marrow signal alongside low red blood cells count?     ... View more

Yup - another one here..... coming up for 5 years since diagnosis of IBC with spread to bones. Many treatment options experienced which were fairly new and a couple that weren't even around then.... Progress is always being made. ... View more

Thought I'd better post an update on the sciatica-type symptoms which I'd wondered might be down to Denosumab, to alleviate any poss concerns! ..... They're not! MRI has shown I apparently have a slipped disc! Can't blame the drug then!   Only side effect I seem to be getting on a regular basis from Denosumab is a day of increased bone pain and a headache. Fine after that.    ... View more

Hallo Desi-2 - No - my inability to tolerate Letrozole was after weeks of being on it and struggling with very bad joint pain. If you've only been on it a short time perhaps it's just your body becoming accustomed to the changes? Hope it settles down for you and works as planned - what's okay for one of us isn't always okay for another!   ... View more

Hi..... Cant really comment on your specific question about Letrozole as it was the only treatment I had which I really couldn't tolerate and had to switch (to Aromasin). But in answer to your second question: I was diagnosed with primary and secondaries ("extensive" bone mets) at the same time in 2009 and did have a mastectomy. At the time, the choice was left to me ... ... View more

Well, I'm booked for the treatment next Thursday, Dec 12th so we'll see! Will post an update. The information leaflet the hospital has given me shows that the brand name for the treatment carrying the "active" ingredient of Samarium, is Quadramet. And there's quite a bit of info "out there" when you google that!     ... View more

Welll am in the week running up to my 5th injection and am again experiencing the sciatica-like discomfort and occasional numbness down my right leg that I experienced last month. So - whilst we are all different - I'm making the connection that perhaps Denosumab monthly doesn't control my bone pain as consistently as Bondronat daily......  Either that or the existence of progressing bone tumours are making themselves more known in the last 4 months....Or it could be osteoarthritis-based (had left hip replaced couple years back)...    Question is - do I stick with it or revert back to the tedious process of Bondronat by mouth daily and maybe still find that progression is the cause of increased pain? Or "up" the painkilllers (am on Meloxicam, paracetamol and ocassional codeine (but hate the side effects of latter!)). Or wait and see what the Samarium radioactive treatment does which I'm also due to have next week? Pain is confusing me! Has anyone else given up on Denosumab? ... View more

Dont know if I'm allowed to say but I expect the moderators will edit if not! I'm under Poole Hospital in Dorset.   ... View more

Well the bone scan did show progression of secondaries around my skeleton so I am being put forward for this treatment to "have a go" at what's there whilst organs are still clear and bloods generally good enough to take it......Because it can't be given alongside chemotherapy (both treatments hit the bloods hard), I have to stop Capecitabine for the bloods to recover sufficiently before Samarium is given. It is a one-off treatment but can be given more than once if deemed appropriate. After it - and after bloods have recovered enough - a return to Capecitabine (or something else) will be reviewed....   Trying to stay positive about having a break from chemo as am getting quite blatted after 16 cycles of Cape - but a little bit un-nerving to not really know what I'm getting as an alternative and to "wonder" if the break will allow stuff to move into organs! Will report in when I have something to report!    ... View more

5 days before my 4th injection, I experienced increased lower back pain, deep pain in right thigh making it difficult to lift the leg and got pins and needles on one occasion down right leg (which I put down to maybe sitting too long on an uncushioned chair at a meeting) and changed sensation in right foot (which I dismisssd as probably to do with hand/foot symptoms from the Capecitabine). I was due for a bone scan anyway and so mentioned these symptoms - and was immediately confined to a bed for 7 hours and given steroids whilst bone scans and MRI done to eliminate spinal cord compression.....   Fortunately, whilst tests indicated partial loss of power in right leg and altered sensation in right foot, the MRI scan showed it was not spinal cord compression. The bone scan did show more progression of mets in right thigh which was thought may have caused the sciatica-type symptoms but I am due to start Samarium soon (internal radiotherapy) to have ago at them.anyway so no further treatment was proposed.   But - having surfed various sites (oh! oh!) for Denosumab side effects, I do find that sciatica-type symptoms are reported under the "less common" side effects so wonder if this episode was Denosumab-related. I also wonder if - being towards the end of the cycle, the effects of the last jab were simply wearing thin - something which I never experienced with a previous daily dose of Bondronat and so was unfamiliar with breakthrough bone pain. .   Two days later and I fell down the second half of our stairs......I have no idea what happened - pure coincidence - or related to loss of power/sensation? Anyway - testament to the efficacy of these bone-strengthening drugs, nothing broke and I just have some impressive bruises..... . Anyway - all conjecture and will probably never know if Denosumab - but hopefully offering reassurance for anyone else experiencing same sort of symptoms!        ... View more