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Metronomic therapy

by Fiona2020 - February 16 at 4:08 PM

Does anyone know of institutions performing "Metronomic therapy"?

The introduction of the maximum tolerated dose in usual treatment protocols made necessary the imposition of rest periods between cycles of therapy—a practice that not only involves re-growth of tumour cells, but also growth of selected clones resistant to the therapy. Hence, the therapeutic success obtained during the first cycles of treatment reverts in the direction of growth of more malignant metastatic tumours with no therapeutic response. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2669231/ 

My cancer is rare and without a cure. I wonder if the value of this approach especially in my case, is that instead of the maximum treatment (causing organ damage and plantinum resistance causing cancer to grow unchecked) giving lower chemo doses closer together, long term, in effect kicking back cancer, making it a chronic condition (I could live with that!)

What have you heard? 

RE: Immunopower vitamin supplement

by Fiona2020 - January 12 at 3:50 PM

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Does this sounds like an advertisement?

Although run by Cancer Treatment Centers of America (CTCA), this site is where legitimate patients and devoted caregivers seek advice and comradery.

On May 12, 2019 4:59 AM Michaelscrosby wrote:

Hi Daniel, glad to hear it’s going well. The first 4 rounds for me went smoothly, round 5 and 6 were difficult as my body had finally had all the chemo it could handle. So hang in there and hunker down for the last 2 rounds. But I made it through all 6 rounds and so can you. I had and still have the same spots in my lungs like you, all remained stable and haven’t changed in over 2 years so they say it’s probably nothing to worry about but they still check and document them with each passing CT scan. I’m coming up on two years since my last chemo treatment and up until now I fly down to Houston every three months for follow up CT. Actually they just graduated me to scans every four months as I approach my two year post chemo. In fact I will be at MDA on May 29-30 for my next CT, if you will be there then perhaps I could come visit you, please let me know. Regarding the ringing in your ears, I had the same thing from the cisplatin and I’m sorry to let you know that two years post chemo and no improvement for me. Hopefully yours will go away. But for me I just view it as a small price to pay for a chance to be cured. Just turn your favorite music up a little louder and you won’t even hear the ringing. Ha-ha. Actually it’s when it’s quiet that it bothers me most, I sleep with fan or sound machine and it seems to help. Hope the rest of round 4 goes smooth and wish you the best for your final 2 rounds. Safe travels and keep me posted with updates.

Dear ALL Urachal Adenocarcinoma contributors,

I've so appreciated your informative posts. I had appropriate UA surgery Oct 2017 w clear nodes/margins and no mets, but was not offered prophylactic chemo. Lung mets Aug 2019 and start G-FLP this Monday at MDAnderson.

Now for the questions: What are your thoughts about your treatment and results? Do you think post op prophylactic chemo would have made a difference for those w mets? Tips for pushing through chemo? Any other treatments you have heard of?

I do not think MDA is looking to change their regime but i hear of abdominal cancer patients even for rare appendix CA receiving Hyperthermic intraperitoneal chemotherapy (HIPEC) post op who have not developed mets years out, about promising anti-angiogenesis drugs likeBevacizumab (Avastin®) that rob CA of blood supply, giving G-flip w high dose IV vit C, or more frequent administration of lower dose G-FLIP with irinotecan. What have you heard about other treatments?

a thousand thanks!

On Jan 02, 2020 5:22 PM dstef69 wrote:

HI Fiona, I’m Daniel, I was diagnosed with urachal cancer Dec 2018. Jan 13 ’19 I had laparoscopic surgery in Atlanta (7x6x5.5cm tumor,partial bladder, urachus and umbilicus removed, no lymph nodes found). 6 weeks after the surgery I started kemo,6 cycles of GEM FLP(dexamethasone,leucovorin,5FU,cisplatin and Gemstar/gembcitabine)at MD Anderson which I finished middle of June ‘19 . Same like you 1 week on 2 weeks off. The place is great, good food, the doctors are with you all the time, talk with them if you have any problems. They asked me to walk because my body retained water so I walked around 2 miles every day on the skybridge between main building and mayo clinic which it’s about .25miles one way. A little bit of nausea at the end of every cycle but I was good enough to fly back home (Atlanta GA) The treatment side effects was Tinnitus and a little hearing loss which started after the 2ndcycle. I saw an ear dr. there but it wasn’t too bad and actually I still have it but learned to ignore it.The "" target="_blank" rel="nofollow">http://it.The " target="_blank" rel="nofollow">it.The biggest problem for me is neuropathy on my hands (numbness on my palms) and my feet. Actually the hands aren’t that bad but the feet are numb all the time which is hard especially winter time (getting cold very fast).It started after the 5thcycle and got worse after that. I took magnesium, gabapentin but it didn’t help. The dr. said that it might go away after 1 ½ to 2 years. Overall the treatment didn’t worked for me, on the last ct scan (dec21’19) they found small nodules in my lungs so I’ll be back January 24 for full body scan/bones and go from there. I wish you all the best and I Hope the treatment will work for you!

your post is a helpful relief to interact with a real and similar patient. thanks for being so kind as to share.

Am i understanding correctly you had the surgery Jan 2019 but NO mets until Dec 2019?  i had same sx (Oct 2017) as you but open abd (no nodes and clear margins no mets) but was NOT offered chemo post surgery, then develped lung mets 2y post op (Aug 2019).

I am so relieved to hear you tolerated the 6 G-FLP cycles w/o major side effects. I hear tinnitis and neuropathy are typical of Cisplatin. Do you think it was the best treatment or have you heard of others? What do you think about your recent lung mets finding and what treatment will you opt for next?

I start G-FLP R#1 Monday Jan 13th - 18th so will miss the opportunity to personally thank you and I cheer your fight, as you have with mine.

On May 12, 2019 4:59 AM Michaelscrosby wrote:

Hi Daniel, glad to hear it’s going well. The first 4 rounds for me went smoothly, round 5 and 6 were difficult as my body had finally had all the chemo it could handle. So hang in there and hunker down for the last 2 rounds. But I made it through all 6 rounds and so can you. I had and still have the same spots in my lungs like you, all remained stable and haven’t changed in over 2 years so they say it’s probably nothing to worry about but they still check and document them with each passing CT scan. I’m coming up on two years since my last chemo treatment and up until now I fly down to Houston every three months for follow up CT. Actually they just graduated me to scans every four months as I approach my two year post chemo. In fact I will be at MDA on May 29-30 for my next CT, if you will be there then perhaps I could come visit you, please let me know. Regarding the ringing in your ears, I had the same thing from the cisplatin and I’m sorry to let you know that two years post chemo and no improvement for me. Hopefully yours will go away. But for me I just view it as a small price to pay for a chance to be cured. Just turn your favorite music up a little louder and you won’t even hear the ringing. Ha-ha. Actually it’s when it’s quiet that it bothers me most, I sleep with fan or sound machine and it seems to help. Hope the rest of round 4 goes smooth and wish you the best for your final 2 rounds. Safe travels and keep me posted with updates.

All Urachal CA survivors

soon I start cycles of 5 day 5FU/leuko, cisplatin and gembcitabine (2 w off, repeat) at MDA for lung mets 2y after initial surgical removal. What can i expect as side effects? How can i best prepare? What has been outcome?

Thank you

RE: Urachal Cancer

by Fiona2020 - December 22 at 5:23 PM

On Feb 14, 2019 2:00 PM MarksMom wrote:

Three weeks ago our son Mark, age 40, had his first CT scan since his en bloc resection. It showed what the radiologist, not checking the patient's gender, characterized as possibly a "cystic lesion arising from the ovary or possibly a cystic external iliac nodal metastasis." It measured 3.75 cm. Mark's oncologist has recommended a follow-up CT in two months and feels it is most likely a residual liquid-filled cyst from surgery, because it shows none of the usual characteristics of a cancerous mass. If tt shows growth in two months, then it is cancerous. I would to hear comments regarding questions we should ask, possible outcomes, etc. i know, when Mark saw Dr. Seifker-Radtke at M.D. Anderson last year, she said any recurrence, particularly in the lymphatic system, meant Mark is Stage 4 and there are no further options. Thanks so much.

I have lung mets from UC and will start w Dr Seifker mid January on 5 days 5FU/leukovorin, Cisplatin and Gemcitabine w 2 weeks off. What chemo regime did you all experience and what were side effects/results? Can anyone w this reigme provide insight?

Hope you are not on site because Mark is cancer free

thanks for reply! A blessing to chat w real persons experiencing strong chemo.

MD Anderson RN told me side effects are well controled and i should expect fatigue the week following chemo, a week of fairly normal health then back for next 5 days of 5FU, Cisplatin and Gemcitabine...was she was lying?

Really, what i should expect what? Be exhausted, nauseated, depressed, mouth sores, what else? for the full 2 weeks before the next round? A LOT? a bit?

What tips to prepare my husband and me for chemo? I plan to start mid January 2020.

RE: Urachal cancer survivors

by Fiona2020 - December 19 at 1:27 PM

ours is a nasty cancer. What treatment have you done?

I was fully healthy 60 yo when i had part cystectomy and en bloc removal of urachas / navel and nodes 2017 at MD Anderson.  2 y post op and without any symptoms, i now have terminal lung mets and am trying to decide if multiple rounds of chemo is worth it just to slow growth (combo gemcitabine, cicplatin, 5FU/Leucovorin).

Can anyone tell me quality of life undergoing THIS regime? What else should i know/consider?

RE: Urachal cancer UK

by Fiona2020 - December 19 at 1:12 PM

I was fully healthy 60 yo when i had part cystectomy and en bloc removal of urachas / navel and nodes 2017 at MD Anderson Houston TX. All these tissues MUST be removed. After 3 mo at home w lots of abd swelling / pain and gi discomfort i could return to work desk. 6 mo after i had near normal energy thanks to husband's care :-).

now, 2 y post op i have terminal lung mets and am trying to decide if multiple rounds of chemo is worth it just to slow growth (combo gemcitabine, cicplatin, 5FU/Leucovorin) .

Can anyone tell me quality of life undergoing THIS regime? what else should i know/consider?

Praise God for your remission!! Hope you celebrate

Orignal cancer was rare, urachal adenocarcinoma. Chemo is combo 5FU and Leucovorin, Gemcitabine and Cisplatin 5 days every 3 weeks which might reduce tumors but is not curative. Seems the treatment could go multiple rounds if i tolerate, but i dont' know what that means in real life

If anyone has been on this combo pls share your experience. What questions i should ask MDs?

Thanks so much for reply.

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About Fiona2020

Bladder Cancer, Lung Cancer - Adenocarcinoma
Side Effects, Chemotherapy, Cancer Nutrition, Supplements

In Oct 2017 I was healthy 60 yo when diagnosed with Urachal Cancer for which I had partial cystectomy and en bloc removal of urachas / navel and nodes at MD Anderson Houston TX (MDA). Despite clear follow ups through
Aug 2019, I am now with multiple lung mets. We start up to 6 rounds of combo gemcitabine, 5FU/Leucovorin and cisplatin, (5 days tx w 2 weeks off) at MDA early 2020.

Why was no prophylactic chemo offered at surgery? Why are chest CTs not standard follow up (instead of only Chest XR)? MDA Surgeon and oncologist said clear margins/nodes indicate best prognosis but others on this site with similar surgery also developed mets. How can we advocate to avoid mets? Since there will never be large numbers or interest in our cancer, how can we advocate for translation of findings from cancers similar to our rare UC, into our treatment?

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