Thalidomide, cancer and Crohn’s - for Daphne
Thalidomide, cancer and Crohn’s - for Daphne Hi Daphne,
your response today, so very welcome, has made me look into current research for Crohn’s on the net and got some interesting articles that I will address with my Gastro on Thursday. Thalidomide is indeed being used now for Crohn’s, along with other drugs (article didn’t state which ones) and shown a marked improvement in symptoms, according to a Mayo Clinic report published May 2006. . If I ever win the lottery, that will be my first stop!! It is also being used for early stage multiple myeloma - I had a good friend in the US die of this about 10 years ago, when very little drugs were then available. As I also have psoriasis and arthritis, thalidomide could possibly help in those areas. I understand people with Crohn’s have high production of TNF-A (tumour necrosis factor Alpha) and thalidomide significantly reduces the TNF-A. It just might be I let the genie out of the lamp and can find some resolution to my problems. It has really come to something drastic when I daren’t venture outside without wearing incontinence pads.
I did get a reply from the Cleveland Clinic gastro today - he suggested Azathioprine/6Mp (which I was violently allergic to), methotrexate (which I seem to have become immune to, although it worked well for about 4 yrs until I got breast cancer), or cyclosporine. another immuno-suppressant. I looked the latter up and in a US trial it was deemed worthless - so much for his advice!
I do wonder if the methotrexate caused my bc as there is a risk of neoplasia with any immuno-suppressant drug. I imagine this is what my current gastro meant when he said he is concerned about my previous cancer and continuing to use methotrexate. It is not keeping the symptoms at bay, so I think I am going to discontinue it in any event. I shall query my gastro about this, as he is a young Consultant, passionately committed to Inflammatory Bowel Disease and seems up to date on current research. Unfortunately, he said he is not up to date with cancer, but did work at one time as a Senior Registrar in Oncology at the Royal Marsden but decided that gastro-enterology was a more exciting field for him - don’t get that at all.
Many thanks for your interest and response. If people think it is hard discussing cancer with friends and relatives, it is a hundred times more difficult with Crohn’s. I sometimes feel so alone with this chronic disease, but am lucky to have found via a US Crohn’s site, a youngish Scottish woman who lives in San Francisco, who has Crohn’s, but unfortunately also a malignant pancreatic tumour, so I do count my blessings.
love, Liz.
Hi Liz,
I hope you have a good meeting with your consultant today and he recommends some new options to try which may lead to significant improvement for you. Let us know how you get on.
It must be awful to have to deal with more than one serious illness, especially, as in your case, it’s difficult to find anybody to talk to who has the same conditions.
It’s good that you can get some comfort from this site and your contact in San Francisco.
Daphne x
Angst for hubby, good news for me Hi Daphne - wish we had the contact button so I could write you privately, as I hate to write all this stuff when hardly anyone is interested, but I do so value your opinion and insight. | think there is at least one lady on the site, and the husband of another poster, who have Crohn’s as well as breast cancer, so perhaps my postings may help them too.
Been a long day today - up at 6 am, rang the prostate biopsy unit when they opened at 7 am to confirm they had “a chair” for hubby today, yes, they did, so a car journey, then a wobbly foot ferry to Plymouth and cab to the hospital.
Two hours later, after he had taken an antibiotic,as had some other males, the surgeon came into the waiting room (6 very nervous males and their spouses sat there) to say the equipment needed for the biopsy had broken down and they could not continue with the procedure. Said they would reschedule all appts in the evening on the 14th Sept. Some guys were going on holiday next week, so don’t know what is going to happen to them. When we got home at 5 pm we had a call from a nurse at the hospital rescheduling for early evening on the 13th Sept. Ted is going into the same hospital next Monday, for an overnight stay, having an angiogram on the 12th and I will go the same route, car, ferry, cab to bring him home. Only to go back there the next day. Ted says we should book a hotel in Plymouth. Ted nor I can drive in the dark, (cataract problems) so it looks like a cab all the way to Cornwall from Plymouth - about £30 each way. I think I am going to ring the hospital and ask for volunteer transport, as I got for the 5 weeks of daily radiotherapy.
As I had an appt with my gastro (which I went through hoops to get an appt) at 3.40pm ) we had no choice but to spend the day there.
Luckily, as we sat on the only comfortable chairs we could find, in the waiting area for my Gastro appt, I was seen one and a half hours early. Magic!
He spent an unbelievable three quarters of an hour with me, talking about various medication options. He said to me recently his first oath as a doctor was" First, do no harm" and he is very considerate in pointing out the serious side effects of some of the drugs available for Crohn’s and he is particularly concerned with my previous breast cancer. Gosh, when I look back at the first bc Onc I had, he told me zilch, and was very antagonistic about my taking mtx for Croh’ns when having FEC chemo, but suggested nothing to sort out the Crohn’s.
I had looked up Thalidomide on the web and it is indeed used for Crohn’s, but my gastro said only for 30 cases in the UK and he said the side effects are very serious, and the licensing procedure and monitoring are onerous, both for me, and him. He said that is a last resort, and I agree. So, we have agreed I will double my methotrexate injections, above the prescribed amount, to 25 mg weekly, and I will also take Cipro (an antibiotic) daily and see how I get on. I will see him in 3 months, but can contact him before if I have problems. I have monthly blood tests for mtx as it can be very toxic to the liver, and so far so good, which he is amazed at, as alcohol is prohibited, yet I still drink 3 or 4 glasses of white wine an evening. What is one’s quality of life?
Methotrexate troubles me somewhat, but I had perhaps the best 4 years ever since I was 26 yrs old and dx with Crohn’s, just before I got breast cancer. The reply from the Cleveland Clinic said that immunosuppressants can cause “neoplasia” - had to look that up, and Dr. Hayward said, immediately, “yes, cancer.” I then asked if, because I had taken methotrexate for 4 yrs before being dx with bc, if this caused the bc. He truthfully, said he didn’t know, as there is no valid database in England on methotrexate, but there is in Sweden, as with all drugs. He said the jury is still out, but I have to decide whether I want quality, or quantity of life. Well, of course, I want both, don’t I? I have decided I want quality.
I still don’t understand why methotrexate was used for bc, yet as an immunosuppressant, it can cause cancer. He said he doesn’t either, and neither do any doctors that he knows of.
I just felt I had to go with gut instinct and agree to, well, what we both agreed to as a way of controlling my dreadful diarrhoea. I know my own body and if I get any serious side effects, I will contact him urgently.
Got a nice weekend to look forward to - friends who live in Spain (where we lived for 8 years) are taking us out to dinner on the Barbican tomorrow evening as a belated birthday present. Saturday I am busy all day with the changeover in our holiday apt here, and then out again Sunday for lunch with friends at a glorious old hotel on the cliffs on Whitsand Bay. Going to get some more incontinence pads at the local chemist to be sure I am okay.
Next week is going to be a nightmare with Ted in hospital for 2 days for an angiogram on his heart, then back the next day for the prostate biopsy (I think we are both reconciled that it is probably cancer so won’t be that much of a shock)
just want to get it over with, as we all did with bc diagnosis. We will prevail together and get through things.
Oh, so good to come back home to this lovely Fort - there is a full moon tonight, casting moonbeams on the water outside. Weather just glorious at 72F, so not too hot nor cold.
Thank you for being there for me Daphne, when I need to talk to somoneone who cares, outside out of our immediate environment.
Love,
Liz.
Hello Liz Glad to hear that you’ve got some nice things happening this weekend. We all need regular treats to help us put our troubles aside for a while.
Sorry to hear your husband’s biopsy machine broke down. Reminds me of a stereotactic core biopsy I had before I was diagnosed. The machine broke down, but not until after I’d been clamped in it. I had to go back two days later, which was OK as it was a different doctor and she seemed nicer.
I hope the new treatment works for you. It sounds like your doctor has been very straight with you and given you all the information you need to make choices.
Let me know how things go next week. If you want to contact me direct, you can on the other site.
Daphne x
Thanks Daphne I’ve got matters more into perspective today - we both felt mentally shattered by Thursday’s experiences. I’ll contact you direct from the other site when I have some news. Your advice is always so encouraging and welcome.
love, Liz.