dizzybuff38

to carolupa:

Just caught up with this thread - ONJ = osteonecrosis of the jaw.  I think you will find that ONJ can be a side effect of all the bisphosphonates (I take Alendronate once weekly orally) as I was on Arimidex 4 yrs (stopped it 6 weeks ago due to severe hip,feet ad hand pain - much better now), 30+ yrs of steroids for Crohn's which has depleted my bone density, osteopenic at present, but feel I ned some kind of bone strengthener. Last year I broke the metatarsal bone in my left foot, in a wheelchair for 2 weeks, then crutches for 4 weeks. Just healed nicely when I broke a bone in the right foot! Hope by taking the bisphosphonate i can prevent a hip fracture, and figure I will live with the possibility of ONJ. 

I have been on Alendronate for 3 yrs (I think - time flies by) and don't seem to have any side effects that bother me. My bc surgeon said a lot of people cannot take bisphophs as they get stomach side effects.

Liz.

Dx non palpable IDC Jan 2003, 2 cm, stage and grade 2 with associated DCIS, intermediate nuclear grade. 3/18 nodes +, ER+, PR not done, HER2-.  Lumpectomy, total axillary removal, 6 x FEC, 25 rads.

Susan and Member of the Club - many thanks for your advice.

I guess my mind is working overtime as it was difficult to take in all that the gastro said last Wednesday - it was a 40 min consultation and he does rather blind me with science at times. Told me I have "empirical problems" - hadn't a clue what he meant and was ashamed to show my ignorance. Hubby (a scientist) afterwards said it just means he doesn't know what to do and is flying by the seat of his pants. At least the gastro has a sense of humour - we were looking at the print out of my latest blood tests for methotrexate side effects, and he mentioned the C-reactive protein level - I said it is 10, what does that mean? He answered: "one less than 11, one more than 9!" We all cracked up laughing and it did diffuse a rather tense situation.

The only time I have had these particular symptoms, particularly nausea, loss of appetite and significant weight loss was when I had FEC chemo in 2003.Then, I was totally faecally incontinent and had to wear pads.  This time, if I eat so much as a piece of toast, my abdomen swells and it is difficult to pass faeces - when I do they are pale, greasy and float. Sorry to be so gross.  The Crohn's flared as the Oncologist said he would only treat me if I stopped the methotrexate, and of course, I had a bad flare. Got a new Onc and she prescribed daily dexamethasone for the 4 months of chemo, and had the hospital send me a huge box of Fortijuice, sipped 3 cartons a day, each of 300 cals and was the only thing that kept me alive, besides gallons of non-alcoholic ginger ale.  I had no solid food for the whole of chemo but bounced back after recommencing methotrexate. I guess that is why I am concerned now as these symptoms just appeared out of the blue and if the mtx was causing them, it would have happenedlong ago as  I have been on it for 7 yrs. The gastro has prescribed domperidone and omeprazole but still nauseous and no appetite.

The CT scan order stated: "Complex Crohn's and bc - pelvis,abdomen,liver and pancreas." Gastro didn't mention liver and pancreas at the consultation, which is why I guess I panicked. He did say every time he has scoped me, the small intestine and colon are full of inflamed ulcers and crypt abscesses, but he has never, in the 5 yrs I have been under his care, ordered a CT scan.

This doesn't feel like a Crohn's flare, my temp is not raised and I have no rectal bleeding. I have had many flares in the past 38 yrs, requiring in-patient treatment of IV steroids and transfusions.

I have never had pancreatitis so don't know the symptoms, but guess it probably is that or the strictures.

Thank you for letting me vent - it seems so much better now that I have been able to write down my symptoms and get focused. My 79 yr old husband is not well and I hate to bother him. He has suspected CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), not been able to walk more than 50 yds for the past 6 yrs, feet and lower legs numb with no sensation. He has seen many specialists, cardiologist (got a blocked artery but doc said this is not causing the problem as smaller arteries have taken over), vascular surgeon (reduced circulation in his legs, had a stent put in right leg), neurosurgeon for highly suspected spinal canal stenosis, MRI's showed some scs, but not enough to cause the problem,then to current Neurologist who ordered nerve conduction tests.  Got a partial diagnosis of "sensory/motor, predominantly sensory axonal peripheral neuropathy" but this doc said this is not the whole picture. I have now located a world renowned Professor of Neurology, whose speciality is multiple sclerosis, which CIDP is allied with, although very rare. He is at the new University medical school in nearest city and we are hoping to get a private appt with him next week for further testing. It has been a nightmare, as we are restricted to only going to stores,restaurants,etc. where we can park within 50 yds.

Hopefully the next few weeks will see both of us with definitive diagnoses, have appropriate treatment and get our normal lives back together.

If it is okay, I'll post when I have the scan and scope results.

Thanks again to all who responded - much appreciated.

Liz in Cornwall,England.

Hi all, apologies for the length of this , but I really do need some help. Short history; dx ibc, 2 cm stage and grade 2, with associated DCIS Jan 2003. The number 2  is definitely not my luck number! WLE and total axillary removal, 6 x FEC chem and 25 rads.

Had 5 yrly review Feb 2008 with bc surgeon..blissfully NED (Onc, now retired, discharged me after rads 4 yrs ago and never seen another one since, but do see my bc surgeon annually)and waiting to see a new one as I have stopped Arimidex for severe bone problems..  

Suddenly 4 weeks ago I developed severe nausea, total loss of appetite, bloating, dyspepsia and steatorrhea, weight loss of some 14 lbs...can barely manage a fruit yoghurt and a banana each day. Big change in bowel movements from 4-6 diarrhea to almost constipation.

As I have had Crohn's for some 38 yrs thought this may be the recently diagnosed strictures in my small intestines, but asymptomatic then on MRI.....big problem now and last Tuesday rang my specialist IBD nurse - she talked to my gastro within the hour and got me an urgent appt in his clinic next day. Wednesday, 45 mins appt (socialised medicine in the Uk, so grateful for the attention as you normally get a 10 minute slot.)

He has ordered a CT scan of my abdomen "due to complex Crohn's", dx weight loss, dyspepsia, bloating , steatorrheia. I was aghast this morning when the CT scan admin gal rang to say they want to look at my liver and pancreas. I have monthly blood tests as I self inject methotrexate for Crohn's and my liver blood panels are in range, but my MCV and MCH bone marrow levels are high.

Could anyone advise me what are the symptoms of liver/pancreas mets?

Appreciate any input as to symptoms of liver/pancreatic mets with bc..althouth I have never heard of the latter with bc, but had a lovely friend in San Francisco that had Crohn's and died last year at 37 yrs, with pancreatic cancer.

So tired tonight. struggling with concurrent disease.

Any input/advice/experience gratefully received.

Liz in Cornwall, England.

He has ordered a Catscasn of my pelvis, abdomen, liver and pancreas, and an endoscopy of my GI upper tract under sedation in the next few weeks.

I am concerned about bc mets, rather than my Crohn's problems, as I know my current problems are not due to inflammatory problems - have weekly methotrexate for Crohn's, stopped Arimidex 6 weeks ago due to severe bone problems in hips, feet and hands,and waiting for a referral to a new Oncologist for alternative AI's.

Apologoies for this mess of an email...so desperately tired and worried.

Any advice welcomed.

Liz, Cornwall, England/

I started Arimidex Feb 2004, after 2 months of tamoxifen. I have had hip pain for most of that time, and it really affects my sleep. I wake almost every 2 hours with excruciating pain in my left hip, turn over, pain stops, then cycle begins again.

I went to my GP 5 weeks ago about the pain in hips, feet and hands and he sent me for an x-ray - normal. Went back 3 weeks ago and we decided to stop the Arimidex for 3-4 weeks to see if the pain diminished - which it has thankfully. Seeing him next week to discuss the situation and ask for a referral to a new female Onc at my hospital - mine retired last year.

Lexi - wish I had the answer! I was dx with osteopenia last year after a DEXA scan - thought to be the result of 30+ yrs of steroids for Crohn's, but exacerbated by Arimidex. I am on weekly Fosamax for that, with daily Calcichew/Vit.D3.   Also dx with osteo arthritis of hips, hands and feet after a bone scan. 

As my bc had spread to my lymph nodes, I am concerned about stopping Arimidex and having no protection against bc recurrence. Does anyone know if you can go back onto tamoxifen after 4 yrs of Arimidex?  Any advice much appreciated.

Liz.

Addendum...whoops..sorry,  chemo brain (still on methotrexate weekly for Crohn's) should have said discharged by the Onc in Feb 2004!! He has since retired and I don't see another one, but my bc surgeon is great. Feel I am floundering in nether nether land and none of my doctors talk to each other. Think I may have to call a symposium of them and bang their heads together to sort myself out. I wish!

Liz, in hope of a solution.

Hi ladies - come and live in England - we get all our meds for bc free, and surgeries, treatments, scans etc. ! But... and it is a big one, our survival stats for bc are equivalent to Eastern Europe. Dire!

Seems we are between the devil and the deep blue sea. Just so glad I live in England, after living in the 3rd world of Spain for some years. One doctor there, hospitalised with a rectal haemorrhage for Crohn's,  came into my private room with a cigarette hanging out of his mouth and proceeded to draw diagrams on the back of an old envelope. Glad we got the sense to repatriate back to England, as some of our American friends also did back to the USA. Sun, sea and sangria is no substitute for proper medical care.

I don't understand why America, perhaps the richest country in the world, doesn't have socialised medicine as we do in England. I am appalled that some women (and men) have no insurance with life threatening diseases that can make them bankrupt without top of the line insurance plans. You guys have to find another way. Just wish that Hillary Clinton could have sorted out a national health care plan when her rotter of a husband was President. Don't think she can do it now.

Liz - happy back in England where I don't pay a single penny for treatment, drugs etc.

I have just rcvd my qtrly copy of the English Crohn's Assocn newsletter with a very interesting article on bone loss by Dr. Hash Kriel, a research fellow at the Bristol Royal Infirmary. His research was dedicated to Crohn's patients who have used steroids and suffered bone loss, some for as little as 8 weeks. I was on steroids for 30 yrs, now on weekly injections of methotrexate and doing well, except for the bone problems.

My interest is twofold - obviously the long term effects on my bones of steroids, but particularly being on Arimidex for 4 years, when my bone density has significantly decreased - I had two spontaneous fractures in both feet in 2007, just by standing up, and am worried about a hip fracture as I have osteoarthritis in both hips, hands and feet, and dx osteopenic. I am currently taking alendronic acid orally, weekly and twice daily Calcichew/Vit.D.

My bc surgeon was concerned at my 5 yrly review in Jan 2008 about continuing with Arimidex and further bone loss/fractures, but wants me to continue due to lymph node spread. He referred me to a Professor of Endocrinology, who was supposed to have a specific interest in the side effects of Arimidex and bone loss, but he has now referred me to an Oncologist. (I was, unbelievably, discharged by my Onc after finishing FEC chemo and 25 rads in2004 - he has since retired and I don't have an Onc.) I was stage and grade 2, 2 cm IDC with associated intermediate DCIS, 3/18+ lymph nodes, WLE and total axillary resection. ER+, HER2-, PR not done.

The results of this research report treatment with risedronate for Crohn's/steroid patients has been very encouraging and I am wondering if any US bc patients with bone density loss have taken this particular bisphosphonate. I saw my gasto last week as I have 2 strictures in my small intestine and he is referring me to a gastro Oncologist.  None of my doctors seem to talk to each other, and with concurrent diseases, often feel as if I am falling between the cracks.

I would really appreciate any insight/advice/experience as I don't know anywhere else to post my questions.

Thank you for listening.

Liz, Cornwall, England.

I didn't even know I was having a core biopsy - was recalled to a breast care centre after a 3 yrly mammo. The original mammo showed a spiculated mass. At the recall I had a compression mammo, an ultrasound and then a biopsy - done under ultrasound with a local anaesthetic.No problem, just a stab and no pain. The biopsy consisted of a needle, guided by the u/s, next thing I knew, like 30 minutes later, I was told I had cancer and a date for surgery.

I only started getting copies of my tests etc. after I was diagnosed, so don't have a copy of the original biopsy. It did unfortunately turn out to be a 2 cm invasive ductal tumour, with associated DCIS, but I opted for a WLE (wide local excision) and rads. Again, a problem, as the 8 sample nodes showed the cancer had spread to 3, so I went back for a total axillary resection - thank God I did, as another node was positive. It was a huge learning curve. That was 5 yrs ago, and I am so glad to say I have had no recurrence.

Your results sound absolutely fine and nothing to worry about. "Surgical" I guess, just means they had to do a surgical procedure, i.e. take samples of the cells where the abnormality is.

Take care, and get on with your life. You are in the 80% of women who present with abnormalities, and have a benign diagnosis. Great!!

Liz.

Hi Shannon - as far as my own experience with breast cancer is concerned, you cannot get genetic testing unless you have a close relative (mother, sister, etc) who has bc.  so they can compare the genes. I live in England, but it may be different in the US.

Please don't worry unduly about getting bc unless you have symptoms, otherwise you are compromising your current and indeed, future life. You really are far too young to get breast cancer.

Go and live your life, with zest and hope, and cope with whatever happens, but don't let the fact of your mother's cancer, as sad as it was, dictate your life.

Perhaps you could get some counselling to help you come to terms with your fears? The  Susan G Komen Foundation may help you.

Take care.... live your life  as you want, and don't look back, just forward. Your Mum may be an angel on your shoulder.

Love, Liz.

Hi Annie......I'm not in France, but England, where we have socialised medicine. Free "at the point of delivery", but trying to get them to the point is the operative word!

I wouldn't worry too much, especially in your circumstances with work, for the few weeks until you can get back to the US for a second opinion.   I went for our normal 3 yrly NHS mammo in Nov 2002, no reason to suspect anything wrong. Got a letter 28th Dec 2002 recalling me to a breast care centre of excellenc, but no appt.  What? felt both breasts, nada, and even had the local female GP have a look and feel, still nada.

Finally got seen Jan 13th when I had a compression mammo, ultrasound and core biopsy all within 2 hours. The Consultant Radiologist showed me the original mammo (done at a travelling truck type facility as I live in an isolated Napoleonic Fort on Plymouth Sound) and when I looked, I knew I was in deep trouble. They even gave hubby and I tea in bone china cups when they told me I had a tumour - they never mentioned the word cancer. There was a big spiculated black mass, which was not palpable, so I am grateful for our 3 yrly mammos, which by the way we only get from 50 yrs. Shocking in retrospect. 

It took 4 days for the pathologist's report and it was a 2 cm invasive ductal tumour, with associated intermediate DCIS.  That is all I knew then, but after a lumpectomy and sample node removal (we didn't have sentinel node biopsy here in those days), the cancer had spread to 3 of the 8 sample nodes. I had already booked a visit to see friends in Tampa in the Feb, and the Director of the breast care centre told me to go ahead and they would schedule surgery for the week I came home. In the event, I decided to cancel my trip and had the first surgery mid Feb. So, I went from from Nov to Feb, with the medics knowing 90% I had a malignant tumour. I don't think those 3 months made any difference to my ultimate prognosis - the only factor I was concerned about was that the mammo done 3 yrs prior, showed no mass, no DCIS. and I should have gone for annual private mammos, but hindsight is a great thing.

I do hope your lump is benign, as some 80% of lumps are, my bc nurse told me. If however, it is malignant, it is not the end of the world, there are many new chemo treatments out there now and the survival stats just get better and better.

Just curious by one of your earlier remarks...are you Jewish? I have had Crohn's for 38 yrs and every gastro I have seen has always asked me this question. I can only reply "Don't know" as my maternal grandfather was possibly Jewish but the town he lived in England had their synagogue burned down in WW11 and there are no records.  Crohn's and breast cancer are very prevalent in the Jewish Ashkenazi population that fled the pogroms in Eastern Europe in the late 1880's early 1900's, typically to the USA and western europe. Having the two concurrent diseases, my doctors are intrigued as to my ethnicity. I am a tiny little blonde, so not the archetypical Jewish lady.

Take care, will be hoping your lump is B9.

Liz in Cornwall.