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Medical Forum / Diseases and Disorders / Cancer / November 2004Hodgkins Diagnosis
I got the results of my mediastinoscopy biopsy today. Apparently most of the tissue was "fibrous" tissue and contained no cancer cells, because the biopsy was taken from the periphery of the mass. This was thought to be as a result of my previous chemo treatment for NSCLC. However, the suspicion is that there are probably more active cells deeper down so it is still "live" as it were. They found two Reed Sternburg cells (yes - only two !) which points to Hodgkins as did a couple of other tests they performed - although I'm not sure if this was from the original CT biopsy or the more recent one. The samples have also been sent off for another second opinion from the Royal Marsden. So, I guess this is great news, given that the treatment is very effective and the intention is to cure. My previous NSCLC had been diagnosed as being terminal (although I never accepted that outcome) My only lingering doubt is that the diagnosis isn't as conclusive as we would like but these guys are the experts so I guess I need to go with it. Now comes a heart scan, four cyles of chemo (ABVD) which will doubtless lead to my already tingling feet turning to blocks of "wood". They are going to put a PICC line in next week ready for the start of chemo the week after. To be honest I am dreading that more than the chemo - anyone had any experience of these? More importantly will it affect my swing ? (golf) Also, I believe that another type of chemo for HL is Stanford V, which is currently on a clinical trial in the UK - is there any evidence from anywhere else that this is more effetive than ABVD ? Keep you posted Andy M > Now comes a heart scan, four cyles of chemo (ABVD) which will doubtless lead > to my already tingling feet turning to blocks of "wood". They are going to [quoted text clipped - 4 lines] > currently on a clinical trial in the UK - is there any evidence from > anywhere else that this is more effetive than ABVD ? Hi Andy, if i recall correctly, it was AR George who said that his oncology team started giving him calcium and magnesium before and after each chemo treatment as an aid for the neuropathy. I don't know if that's a standard or something new, or just a try in his specific situation. It is something that you may wish to advise and/or inquire about with your onc team (ahead of start of treatment). I ran a Google search and you may have to poke around here about Stanford V (unless Steph or others know) http://tinyurl.com/6bdv9 Google search result on Stanford V and clinical trial - second one down, there's a contact name and phone number. (that's the Phase II trial) One is still open A Randomized Phase III Trial of ABVD vs Stanford V +/- Radiation Therapy in Locally Extensive and Advanced Stage Hodgkin's Disease E2496 (7th down in the search result) HTH and best wishes with the PICC line, Hope you'll keep in touch, J ><SNIP> > [quoted text clipped - 3 lines] >neuropathy. > >J Hey not to but in but during my Chemo my ONC did perscribe Calcium and Magnesium for the neuropathy 100 mg daily and it did help with it but chemo only effected my hands and arms not my feet. Sorry to but in. CCKMA Frank (aka) "stew" > ><SNIP> > > [quoted text clipped - 6 lines] > Magnesium for the neuropathy 100 mg daily and it did help with it but > chemo only effected my hands and arms not my feet. Sorry to but in. Thanks for butting in Frank and correcting me as to who it is. (apologies to George). Interesting observation. I wonder why that was? Sheer mass (of nerves in the legs as opposed to the feet)? The hands and arms are closer to the heart which is pumping the chemos (and the cal/mag around the body. Oh, well, I can't logic it, but I'm pleased to hear that your feet didn't get hit. and thanks again for your reply, Best, J > Thanks for butting in Frank and correcting me as to who it is. (apologies > to George). [quoted text clipped - 10 lines] > Best, > J Thanks J and Frank. I will ask the doc about this next time I see her. I did mention this at my last consultation but she didn't suggest anything for it, and my GP didn't have any suggestions either. Can you get this over the counter or does it have to be prescribed? Thanks AndyM > Thanks J and Frank. I will ask the doc about this next time I see her. I > did mention this at my last consultation but she didn't suggest anything for > it, and my GP didn't have any suggestions either. Can you get this over the > counter or does it have to be prescribed? Hi Andy, Sorry I'm late. I read your post and forgot to reply. Frank gets his prescription (with the blessing and knowledge of his onc). So perhaps it's best to check with your oncologist. She knows your particular health profile and has your bloodwork. If she's unaware of this protocol, you could tell her that an American seems to have had less neuropathy damage by trying this and "would it be worth a try?" If she doesn't prescribe such, but has no objection that you try some, then you have the dose(s) that Frank takes. I guess my concern is some have neuropathy and it goes away eventually and some continue to be plagued with this for a long time, if not permanently. So if there's a chance this might help, is why I mentioned it. Let's see what she thinks. Ask her by phone or the oncology nurse, (if you can) before the next treatment. An option is to ask if it can be given by infusion. I've seen that mentioned here. <http://www.asco.org/ac/1,1003,_12-002636-00_18-0027-00_19-00467,00.asp> You could maybe print that up and fax/drop it off with your questIon? Best wishes and hope this helps, J <BIG SNIP> also Andrew I was taking B6 at 100 mg per day not sure if it helped the situation too or not but I know something helped reduce the tingling fingertips best of luck. CCKMA Frank (aka) "stew" > Thanks J and Frank. I will ask the doc about this next time I see her. I > did mention this at my last consultation but she didn't suggest anything for > it, and my GP didn't have any suggestions either. Can you get this over the > counter or does it have to be prescribed? Hello Andrew, my other reply hasn't shown up yet. Frank's getting his prescribed. However, I notice at ASCO, it's a pretreatment infusion <http://www.asco.org/ac/1,1003,_12-002636-00_18-0027-00_19-00467,00.asp> ( Meeting 2004 Gastrointestinal Cancers Symposium) - Maybe print this up and show her? Tell her you want to nip this (neuropathy) in the bud before it (potentially) gets worse. If she won't infuse, at least make sure that it's okay with her that you take some. Because it may mean more bloodwork for her/the system. I notice here (at the bottom of the page) http://www.chemocare.com/bio/bio.sps?iBiographyID=9133 "Periodic blood to monitor your complete blood count (CBC), your electrolytes (such as calcium, magnesium, potassium, and sodium levels) as well as the function of other organs (such as your kidneys and liver) will also be ordered by your doctor. " So if she's already ordering such bloodwork and notices differences, she can guide you if she notices that the levels are swinging too far one way (or another), as long as she knows what you are taking on your own. Some person's neuropathy improves sometime after stopping the treatment, some stays as is and some worsens and never goes away, hence if such can be a preventative, without doing harm... FWIW J-not a medic > I got the results of my mediastinoscopy biopsy today. Apparently most of > the tissue was "fibrous" tissue and contained no cancer cells, because the [quoted text clipped - 6 lines] > recent one. The samples have also been sent off for another second opinion > from the Royal Marsden. Hello Andy, How did the second opinion go? And the PICC line? J > Hello Andy, > How did the second opinion go? > And the PICC line? > J I haven't had the second opinion back yet - I'm almost wishing I hadn't asked for it, just in case it comes back as lung cancer again ! PICC line installed today and went very well - didn't feel a thing, although the first attempt ended up going up the jugular vein instead of into the chest. They jiggled it about a bit and hey presto straight into the heart. They then took it back about 3cm and we were done. Also found out they offer free alternative therapies to patients - so I am going to get some reflexology for the neuropathy in my feet. It seems a little better of late anyway, but if they are offering a free service then who am I to refuse?! All set fot the chemo on Monday. Having my head shaved on Friday at work for Charity - seeing as it is going to fall out anyway I figured I should take the opportunity to try to give a little back - chosen charity being Cancer Research UK. Andy M |
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