persistent adverse symptoms post chemo/rad breast cancer

[Thomas32]

Annie needs to correspond with breast cancer survivors who had persistent adverse symptoms that came on during and stayed on, after chemo and radiation was completed. In particular esophageal dysfunction, upper abdominal discomfort, heartburn, foggy brain and episodic nausea. Chemo protocol Cyclophosphamide, Methotrexate, 5FU and radiation for grade 3 ductal invasive node negative.

[Thomas32]

Hi Liz and Ted , it is not my nature to try and bend rules, it is just that I am more keen to keep the slate clean for breast cancer persistent adverse events. I will see if you managed to piece my clues together if I get general correspondence from you and Ted .

Cheers from a cold Auckland.
Tom and Annie.

[Thomas32]

part one: cawood   at ihug

part two ; dot

part three; co

part four;  dot

part five; nz

[lizziecee]

Hi Tom and Annie,
sorry I haven't been back to you.....life pretty hectic at present as I was just this past week asked, and accepted, to be the first Community Leader on Medhelp's Crohn's community forum. Very honoured and excited at my future role.  I have been posting on there for some 3-4 years trying to help whenever I feel I have some pertinent advice or experience. I have found having Crohn's far more difficult to cope with than breast cancer, as the general populace have barely heard of it, and even if they have, don't care to know the details - which they, but not me, find embarrassing. I used to feel as if I was an "untouchable" with the bubonic plague, and if it was talked about at all, it was in whispers, much as cancer was some 20 yrs ago when my father died of colon cancer. I was aghast when my dear late, gentle mother said to me: "Liz, don't tell anyone your father has cancer". I went ballistic, and told her we had no reason to feel ashamed at his diagnosis. Ah well, thankfully serious medical matters are now out in the open and it is my passion to help people with Crohn's and not feel as isolated as I did back in 1970.

Tom, so pleased you finally managed to view our website - one of our retired regular holiday visitors did the website for us as a favour, although by the time it went live earlier this year, most of the year had already been booked by previous guests., but we have managed to fill a few weeks in the school holiday summer period through it.

I'll try and get our email thru - tedark at aol.com (use the ampersand) may just work, otherwise I don't know how to get it to you. I'd be delighted to correspond with you and Annie.

I hope PaulMD responds to your latest post - apparently he is a young Oncologist, living in Manilla. I don't know how he finds the time to answer posts on here, but I for one, have learned so much from his erudite answers. Long may he continue on this forum.

It's late and I have blood tests early in the morning.......

Take care,
Liz.

[Thomas32]

Hi PaulMD if you have the time, and interest, Annie and myself would dearly love to get your opinion on our communication of 31 May 2.28 am. Warm regards and God Bless you for your caring interest in others.

[Thomas32]

As you were! I woke up and found the Fortpickle flat easy as. Also on Google with stunning pics. Cheers Tom and Annie.

[Thomas32]

Last night I replied to your email but I also gave a hint as to Annie and my email address, it seems as if our reply was deleted.  

One thing we wish to make clear is that we are not suing any one of the vast number of clinicians that we consulted. They all tried their best.

My logic dictates that if a clinician cannot provide relief  in a reasonable time, we moved on. But all along I kept an extensive diary that I only produced at the end of an initial consultation We have a govt funded accident corporation and that is where we require information for. We need a causal report that the chemo injury Annie received was the cause, or most likely to have caused,  the iatragenic injury.

Please check your www.fortpickle site as I could not open it. I will try and pick up your address from it to write to you so that Annie and myself can respond to the other non medical information that you and Ken sent us.  Cheers Tom and Annie.

[lizziecee]

Hi Thomas - wow, what a coincidence - my treasured husband is a retired electronics engineer, specialising in miniature instruments, particularly electric vehicles. He will be 80 yrs young in August, but his mind is still very sharp, as is yours! We are struggling to get a dx of his walking problem. He has seen a Cardiologist (had a stent put in his right leg, and an angiogram - a blocked artery but Cardiologist said it is not causing the inability to walk more than 50 yds. We then saw a vascular surgeon who did circulation test - minor problem, but not the caus. We then went privately to a neurosurgeon who strongly suspected spinal canal stenosis, but after 2 MRI's, this was ruled out. Next to a Neurologist who had a neurophysicist do nerve conduction tests on Ted's feet - a partial diagnosis of sensory/motor axonal peripheral neuropathy, but not the caus. Just seen the Neurologist last week and he is perplexed, but did some blood tests. A friend who is a GP suggested it may be myasthenia gravis, but it is very rare and she said she has only seen it in 2 patients in more than 20+ yrs as a GP. We still live in hope of a dx and treatment as our lives are very restricted in where we can go. However, we live in a beautiful old Napoleonic Fort on Plymouth Sound which has been turned into apts. There is always something going on outside on the water especially since we have one of the largest naval dockyards in the world just a few nautical miles away so there are always destroyers, frigates, and even submarines moored right outside. If you want to ake a look, a friend has just done a website for the holiday apt we have here that we purchased in the event my bc was terminal.  I am NED, so decide to rent it and I have enjoyed every second of it and made many new friends that come back twice a year. The URL is: www.fortpicklecombeflat.co.uk  You may get a surprise!

I do empathise with Annie's cognitive problems - at times I have thought I may have early onset Alzheimers,(I am 63 yrs) but after corresponding with other bc survivors, am aware that these post chemo cognitive side effects can last for 10+ yrs. I have found solace in this. Some of the ladies' posts are very humourous and indeed, I have been known to put the teapot in the refrigerator instead of the dishwasher.

Unfortunately I know little about legal redress for post treatment problems. A very few of the ladies on my uk breast cancer care forum have taken doctors to the General Medical Council as a result of misdiagnosis, which has been a lengthy procedure and traumatic for the patient involved. Usually, the drs have been reprimanded and ordered to undergo further training.  They are rarely struck off.  I haven't read of anyone seeking redress for post treatment problems.

You might try posting on the US based breastcancer.org site for any help/insight/advice. With the USA's much larger population than NZ and UK, and their propensity for litigation, there may be someone who has a similar problem.  You could also try the Uk based site (run by the largest bc charity in England), www.breastcancercare.org.uk, where we have some very intelligent and articulate members.

Another avenue to perhaps try is to contact either of our UK dedicated cancer hospitals, The Royal Marsden in Sutton, Surrey and Christie's Hospital in Manchester. They both have websites. Patients with complicated cancer problems are sometimes referred out of area to these hospitals for diagnosis and treatment, when their local hospital is unable to help.My late twin brother who had an inoperable brain tumour wa treated at The Royal Marsden and had exemplary treatment.  They may be able to give you some facts on post chemo/rads long term side effects and whether they have treated any patients with Annie's particular problems.

I am pleased to say that just 4 days on Omeprazole has had a significant effect on my nausea, reflux and loss of appetite. Indeed, hubby and a widowed friend are taking me out today for a roast beef lunch at Whitsands Bay Hotel, on top of the cliffs overlooking the bay, so I had better get my skates on.

Please let me know how you get on.....you are a wonderful writer.

Take care both,
Liz.

[Thomas32]

Dear Liz and your caring Husband, thankyou for your further info. I am dreadfully sorry to hear of your debilitating illness.

During the post ca treatment period, we have now managed to symptomatically 'treat' the individual persistent symptoms. (except the cognitive deficits). We are now into the medico-legal-insurance area where in NZ it is up to the patient to provide a causal link that the treatment received caused the injury. It has to be rare, under 1%. But it is difficult to find proof that br ca treatment cause peristent injury. During the various oesophageal endoscopies that Annie had, biopsies were taken for various tests. Barretts were not identified. But then again I did not let her suffer refractory heartburn for an extended period and let oesphigitis progress from Gr 1 to Gr 3. .When I realised that NZ clinicians did not have the required skills to effectively treat Annie, I,  (76 year old electrical engineer) got involved in research and found a citation by about anti reflux surgery (Prof Tom De Meester USA) Thus the reason for fundoplication surgery. If you Google Prof Januz Jankowski (Oxford) , you can read how Barretts progress.

Regrads Tom and Annie Cawood Auckland NZ
Thus we really just need to hear that some patient did have persistent oesphageal injury post ca treatment. Also episodic nausea that persists. (very low barometric pressure is main trigger for Annie). Thus sumatriptan provide relief.

[lizziecee]

Oh Thomas - what a dreadfully disturbing and painful time Annie has had - my heart truly goes out to her., and indeed you as her carer.

I have been racking my brain (having inflammatory bowel disease from mouth to anus for some 38 yrs now) trying to find that elusive needle in the haystack. Have Annie's numerous clinicians ruled out Crohn's? An upper endoscopy can show mucosal changes, but a biopsy of inflamed tissue is required for a definitive diagnosis. Another off the wall thought is Barrett's Oesophagus - you could try googling it and see if the symptoms fit. I have a male neighbour who was mis-diagnosed with this disease for some years before he got appropriate treatment.

Don't know if this will help, but here goes.....
When I was dx with invasive ductal cancer and lymph node spread in 2003, the first Oncologist I saw said I had to stop my normal Crohn's chemo, methotrexate otherwise I would die of septaecimia when I had the FEC chemo for bc. He had never treated a patient with concurrent diseases and patronisingly said: "I have treated bc and psoriasis" - Well I have psoriasis as well, but it is ike comparing apples with pears. When I asked how he would treat a Crohn's flare when on FEC, he said we would cross that bridge when we came to it. I found him to be very arrogant and dismissive of my concerns. He never bothered to seek peer reviews for concurrent diseases. This was at a hospital in Plymouth, England, that was only one of 6 Breast Care Centres of Excellence.  My gastro said he could not get involved in my bc treatment as bc is life threatening, Crohn's not - which I beg to differ with.

I had just had a Crohn's flare a month before dx and was on 30 mg daily of prednisolone, plus 25 mg weekly oral mtx and got steroid induced psychosis upon bc dx. Absolutely terrifying and I was nearly sectioned.  I was quite aware I needed FEC chemo because of the nodal spread, but was very concerned how I would cope with a flare and no mtx. I then emailed every major hospital I could think of in the USA - Mayo Clinic, MD Anderson in Houston, Cedars-Sinai in New York,H. Lee Moffit Cancer Hospital in Tampa (where a friend is being treated for lung and kidney cancer), etc. all of whom responded quickly, but also said they had not treated a patient with concurrent diseases, but wished me well.  In desperation I then remembered that some 38 yrs ago, my first symptom of Crohn's was an anal fistula and was treated at the only specialised gastro hospital in England - St. Marks, where Crohn's was first dx (Charles Dickens had Crohn's and was treated there). They did not dx my Crohn's and this was done some 2 yrs later, after being an in-patient in 3 different hospitals, as I had moved house. Since then I have moved all around the UK and spent 8 yrs in retirement in Spain, so have not been back to St. Marks. However, I wrote to Dr. Alastair Forbes, Consultant Physician and Gastroenterologist at St. Marks and he responded with a long letter saying my condition is a situation they come across occasionally, and agreed with the advice of my gastro and Oncologist that I must stop the mtx. He went on to say that if the Crohn's did flare during the time of my cancer treatment , which it did with a vengeance, this is something that would have to be treated on its' merits. Furthermore, he said it is likely that steroids would be appropriate but with my history of psychosis the preferred option would be to avoid this and use a nutritional approach. He mentioned he personally knew my gastro and said he is very familiar with nutritional feeding and this would be his first choice in that context.

I changed my Oncologist to one whom addressed my needs and she prescribed a small daily dose of dexamethasone (a steroid but different to prednisolone) and along with Fortijuice nutritional drinks (3 a day, giving me 900 calories in total) I obviously survived the horrendous 4 months of chemo.  I ate no solid food at all, was severely incontinent and virtually housebound, except for visits to the hospital.I lost some 28 lbs when on FEC chemo. My husband at age 73 yrs learned how to cook for himself as I was very nauseous and he being disabled and unable to walk more than 50 yds, has found a new interest at which he excels.

To address some of Annie's symptoms post chemo and rads, I too have "chemo brain" and am often unable to finish a sentence. Many of my bc sisters on the breastcancercare forum have similar problems, even 5-10 yrs later.  I have to write notes to myself daily otherwise I get disorganised.   My eyesight deteriorated significantly after chemo and I now have cataracts in both eyes and stronger prescription spectacles.

Perhaps you could email some of the nationally recognised hospitals in the US, or write to Dr. Forbes at St. Marks in Harrow - his address is:

Dr. Alastair Forbes
Consultant Physician and Gastroenterologist,
The North West London Hospitals,
St. Mark's Hospital
Watford Road,
Harrow
Middlesex HA1 3UJ.
Tel: [phone]
Fax: [phone]
website: www.stmarkshospital.org.uk
Unfortunately I don't have an e-mail address for him.

I am sure he will respond to you with his opinion, especially as you write a very erudite description and history of Annie's problems. He is one of the top gastroenterologists in England and is an adviser to our National Association for Colitis and Crohn's. Even if he cannot help you directly, he can probably point you in the direction of someone who can.

My husband has just asked who I am writing at length to....gave him a short synopsis and he has a suggestion, which is to cut out all dairy foods, including yoghurt. He had been suffering oesophageal distress and often had to get up 4-5 times a night to take Gaviscon for relief. I don't know where he got the idea of cutting out dairy, certainly not from a doctor, and found that his symptoms miraculously went away. We use sunflower or olive oil in cooking and he has dry toast with grilled tomatoes and lean bacon for breakfast or poached eggs. He has thrown the Gaviscon away. He has bought a juicer and now makes his own vegetable juice or fruit juice, instead of having milky drinks.

Apologies for this being so long.......I do empathise with your problem and wish I could do more to help.

Take care,
Liz, Cornwall,England.

[Thomas32]

Dear Dr Paul, a bit more detail as I note your interest in Oncolgy. The initial endoscope for esophigitis found the usual, HPylori and gr 1 esophigitis. HP was eradicated, then with continued refractory heartburn and upper abdominal discomfort (like a tight belt just under the breasts) further endoscopes were not helpful and esophigitis neg. But heartburn persisted and  as you know endoscopy is viewing mucosal only. What we cannot get to understand is what caused the severe distal peri esophageal inflammitiry changes as recorded by fundoplication surgeon viewing distal serosal esophagus.? As a layman I can only assume that it must have been an injury by rad to minute nerves and blood vessels and as slow gut clearing was also later diagnosed and with other gut/esophagus related dysfunction I am trying to find a common factor like the vagus system at distal esophagus. but now I am into your territory.  What is your view on adult stomach migraine?Tom and Annie.Cawood Auckland NZ

[Thomas32]

PaulMD, lizziecee, thank you for your comments. Annie during Jan 1996 at age then 61 started chemo.  She had no pre-existing reflux and episodic nausea. Besides hystorectomy she had no medical history. She was a highly artistic and nationally decorated business entrepeneur-employed 300 people. From the start of CMF chemo she had refactory heartburn and upper abdominal discomfort with eventually sores in her mouth. This became worse during rad treatment, Foggy brain, failed eye sight and 5HT 3 (Zofran) antiemetics only helped her sometimes for nausea. Chemo was then interupted and rad completed. One more chemo cycle attempted  but then abandoned due to severe toxicity. For the refractory heartburn (did not respond to proton pump inhibutors and others) over a period of 5.5 years we consulted many clinicians including 5 different gastroenterologists. Barium X-ray and 3 endoscopes (viewing mucosal) esophagus were not helpful. Gut acid was double normal, motility and valvular problems were then diagnosed. Then a loose partial anti reflux surgery (nissen fundoplication) was successful. The surgeon found severe peri-esophageal inflammation on the outside of the distal esophagus (viewing serosal). Breast sparing operation was next to sternum of the rh breast. Tattoo marks go over sternum. so rad  was not just to rh breast.
For the refractory episodic N we consulted 4 neurologists but it took another 2.5 years before we found on PubMed a citation by Prof Uri Ladabaum et al (USA) a citation re 'Novel approaches to treatment of N&V'. He found that a prophylaxis of amitriptilene (to settle stomach thus not for depression) with a reliever of sumatriptan (migraine ) for this type of disparate illness. No headache an d no eye aura. This was the golden bullet for episodic N. .
All in all we consulted about 50 Specialists and 6 GP's. Mainly in Auckland but also Australia and South Africa. Alternatives--name it we tried it--Had hundreds of consultations --we were ruined financially. Euthanasia was considered during the first 5.5 years when nothing helped Annie and when she was shunted between pschcologists and pschciatrists when our clinicains could not find medical relief for her adverse persistent symptoms..

Our Govt Accident Insurance fund will not help us for a claim of a rare medical misadventure due to treatment received. They were advised by their consultants that breast cancer patients recover symptom free after CMF and radiation and adverse symptoms do not persist. In Annie's case she suffered a rare injury, had adverse symptoms that persisted and were treated (eventually) symptomatically, But the foggy brain and some cognitive deficits have not improved over the 13 years. She will never be the same as before.  We are not against chemo/rad. That is what Oncologists have to use. We cannot in small New Zealand find ONE specialist that can/will  confirm a causal link (or a most likely)  that the treatment she received injured her.  Every one gave a 'temporal report' as to the time of onset of her problems but the Insurer will not accept a temporal report.
We would appreciate to hear from somebody who had persistent adverse symptoms when CMF/rad was completed or abandoned and then had to go on a life time of other medication. Tom and Annie Cawood Auckland. NZ

[lizziecee]

Hi Thomas - I had FEC chemo in 2003, 25 rads, 2 months of tamoxifen, then 4 yrs on Arimidex.  I have been having severe hip, foot and hand pain. DEXA bone density scan showed significant bone loss since starting hormonal therapy. My GP suggested I stop Arimidex for 4 weeks to see if the pain diminished, which it has. He is now referring me to an Oncologist for evaluation and change of hormonals, perhaps Femara.

However, in the last month I have been very nauseous, no appetite, and lost 10 lbs. GP yesterday prescribed Omeprazole, 20 mg once a day for a month. I have Crohn's, from mouth to anus, so this may be the culprit, and not chemo,rads or hormonals. Will have to see how I get on with the omeprazole as I only started it on Wednesday. I have been on methotrexate, oral weekly for 5 yrs, self injected therapy for last 3 yrs and Crohn's in remission. My GP said mtx can't cause these side effects, and I didn't have them before Arimidex/tamoxifen.  

Hope Annie sees a gastro, oncologist or even her PCP and gets some relief. If I can help Annie in any way further, let me know.

Liz.

[PaulMD]

Hi there.

I'm sorry to hear that she's having all of these persistent symptoms.  The esophageal dysfunction may be related to the previous radiation therapy since the radiation beam was directed towards the chest.  However, this is mostly seen on radiation directly to the lungs rather than to the breast and chest wall.  The persistence of the abdominal discomfort may already be a persisting condition even before she had treatment, but was just unmasked after she had chemotherapy and radiation.  She may really have acid peptic disease or weak esophageal sphincter to start with, that was just aggravated by the treatment.  These symptoms may initially be treated symptomatically but I suggest you have her evaluated by a gastroenterologist.  A lot of psychosocial support is also needed and I hope she and her family will get all the support needed.

Regards and God bless.