carm

Dear Carm: Your answer to my question about recurrent/chronic cancer really touched my heart, and I wanted to thank you for it!

I was writing more to you, and decided to post it as a question/continuance, since it may have relevance for several people.

But again, thank you for your kind and helpful words. I'm still fighting to stay alive! Enough for today!

Linda

Hi Carm,

Thank you for posting to my wall. My mom's prognosis is good. She was diagnosed in July of this year with endometrial adenocarcinoma with mets to the omentum only. She is on her 5th cycle of carboplatin/taxol. Although progressing well treatment wise, lately she has been thinking that she is going to die. Can you offer any advice on how I might support her redirecting this perception? Thanks so much for your great work with patients.

Kathy

Carm,

I can't express how much your words have encouraged me. I will reiterate my mom's prognosis in the terms that you suggested. No, she was never told she was terminal, and her oncologist said on her last follow up that she is doing "great." His words exactly. My mom has it in her mind that cancer is deadly, period. I will tell her that she is going to die when she is ready and not a minute sooner, just as you say. Those are empowering words. It is an unusual duality because my mom has been sticking with treatment to the letter and is fighting hard. However, she mentions that she may not be around every so often. This is upsetting to me and to my dad, as they have been married for 44 years. It is also erroneous, and ignites arguments on occasion. I know that cancer is incredibly complex psychologically.

I'm an only child and I believe in getting support in difficult situations. My dad is open to this as well. My mom is coming around. At first she did not want to join any support groups or to discuss her cancer with people outside of the family. This became a burden for my dad and I, so I just told my mom that I need to discuss her cancer and reach out to others for my own well being. She respected that. My mom has agreed to check out a support group for gynecologic cancer. I think this is a step in the right direction. Sometimes the line between being a private person and refusing important resources is a fine one.

Kathy

Carm, I am a wife/caregiver to a GBM brain tumour patient, but I'm also a family member to a 63 year old woman diagnosed at New Year with Primary Peritoneal cancer. I know that this is rare, and is similar on a cellular level with Ovarian cancer, as the cells involved are 'epithelial' cells. Last week, they called off further treatment for her. She has intestinal blockages and fluid on her lungs (one collapsed, one with a drain). She's had so much difficulty eating these past few months that she's about down to skin and bone. Do you have any experience with this type of cancer? Do your 'spidey-senses' tell you anything from what I've described in terms of the time she may have remaining? She's looking a bit jaundiced, but is still pretty alert and animated. There's so little specific information out there about PPC that I just don't quite know what's going to happen next. As it is difficult for my husband (also in palliative care) to watch, I'm just trying to stay a bit ahead of the curve. Thanks. xx Jill

Hi, I have a question. I am taking Chemo again after surgery and this time I have to have nuelasta shot and this has really brought me down. The pain from this shot has thrown me off my center. I would like to know if there is anything I can to do make this more tolerable.

Carm thanks for explaining for me about the staging of ovc and chemo.It means so much to me to hear encouraging words from you..thank you and God bless you...neversaycant

Thank you.

Thanks for writing on my wall! It's so nice to have a support system!

I have serous carcinoma stage I. It is hard to find much info on this particular cancer statistically. I have found the oncologists to be very guarded about giving survival #'s, etc. What has been your experience?

Thank you for being here for the rest of us.

Hey Carm, mom has been on hospice for about 6 wks now. For the past 5 days she has not been eating, I can get her to drink a few Boost through the day but NO food, not even soups that she loves. I know this is part of the journey , how long would you say she can go on like this ?

Thank you and my personal thank you for all the help you give everyone here.

Hi Carm,
Just an update here from Jean in WV. I have just finished my 2nd chemo and since this is day 4 and steroids are now dropping off I am a little weak and staying busy doing little things like using my lap top from the bed. I walk around and eat and drink lots of water.
It is fairly hot today so I am staying indoors and out of th1e sun!
The only side effects I am having now was some swelling in my ankles, and heartburn. I took the garlic and tomatoes from the diet and proped up my feet and wore pressure hose last night and everything is fine again. Takes a lot of adjusting and is confusing. You just need to look at what you did that day to see maybe how to correct it. I hope this Taxotere and Cisplatin does the trick. I am not having as much pain in my lower pelvic region now so I am thinking positive that the tumor on the dome of my bladder may be shrinking. Doc says it was as big as his fist last appointment prior to the chemo. I will stay in touch.Hoping to avoid an operation because that could be risky for sure Hair's gone again....oh well, small price to pay for getting well!
Thanks and will keep in touch on progress.
Jeanie

thanks, tried that site but for zelboraf the patients must be US residents...which we are not, we live in Romania...

Carm, thank you for providing help and hope to so many here. You don't know how much it means to all of us - even us caregivers with loves ones in the fight. Bless you always.

Carb, I am facing a tough decision about using another chemo to fight a pancreatic cancer metasticized to the lungs...nodes are rapidly multiplying.. Hence, a new and stronger chemo which my body may resist due to so many aggressive treatments. My option is to let nature take its course and slowly fade from the scene or perhaps wait for Fukushima to do its terrifying work on the Japanese civilians and others in the irradiated water's pathway. Above all, every nation should have the benefit of scientific and factual transparency. Governments need to act immediately!

thank you so much, will be great to have someone who specializes in this field to talk to and ask questions about things i'm unsure of, i hope you have a great and blessed day

thank Jesus for you !!!!!!!

Thank you for your message. I am wondering if there are any treatment options I could pursue other than surgery? I have an open wound from which I am having a discharge and I also have a hard mass/tumor. Other than surgery all the drs tell me I can try is lidocane/numbing creme. Any other alternatives?

I have been looking for you. I, too, have a benign Meningioma. Being followed by a Neurologist. Have you heard of the blood test CEA 125??? Tumor Marker, I assume.

Hi carm,

You responded to my question awhile ago regarding pelvic exenteration. I had it done 4 months ago and am now about to have the loop ileostomy that I got as a result of the surgery reversed. Do you know what the average recovery time is for the reversal is once released for the hospital. ( I also have a urostomy)

Thanks, Patties

Do you have any information which would help Laureldonovan? Thanks.

Thank you for your answer. I will check with Jackson Memorial (University of Miami) Hospital to see if they do reconstruction. If not I will have my sister check with Sloane in New York.
Thanks again. Will keep you posted.

Hi Carm,
Perhaps you could help MissKittie. She is a newly diagnosed lung cancer patient, probably stage 4. She says that the cancer is everywhere. I think she is very scared and depressed. She is very afraid of chemo and is talking about end of life and hospice. Perhaps you can say something that could make her feel better. You always know how to make people feel better even in the worst situations. Many people have tried to post encouragement, but the latest post sounds depressing. Perhaps you would be able to help her. Thank you for all that you do here at What Next!
--Journey

Hi Carm,

I have been following What Next for almost a year. I was (am) a Stage 4 Cervical Cancer patient. I had a total hysterectomy. My margins were clear, no lymph node involvement, but a pos peritoneal wash and the cerv cancer was on one ovary. After surgery healed, I had 5 weeks of IMRT with weekly lo-dose Cisplatin, declined the internal radiation and then 4 rounds (every 3 wks) of Carbo/Taxol. I developed neuropathy in my feet and legs, so we stopped at 4. I had a clear PET/CT post treatment.
At my follow-up to PET/CT, I was told that there would be no more blood tests and no further scans UNLESS I had unexplained symptoms lasting longer than 2 weeks or spotting/bleeding. The Dr's only do internal exams every 3 months and no PAP. I read (and hear from my 4th angel) that her follow-up is different. Why the difference in post-treatment?
The docs said I have a 40-50% chance of reoccurrence and that weighs heavily on my mind. The cancer diagnosis came out of nowhere and it scares me to think I may not know if it's grown back elsewhere until it 's really far along. Any help you can offer will be greatly appreciated.

Hi Carm, I had my first Chemo today. they used Taxatere and Cisplatin combo.It was a three hour treatment, and I go every 21 days. I have an exam and follow up on the 26th with my 2nd chemo on the 3oth. I will know more clearly about my other options for treating this mestastizing disease. I guess it was not possible to get all the microscopic to keep from coming back after all. I did have a year in remission though. I am thinking since this is originally high grade cancer of ovarian nature it sprang from this resource? Anyway, it is back, and I am afraid it could invade the wall of the bladder and become invasive, so I said do the Chemo immediately. I will be eating the best high alkaline diet possible, since i fell off the wagon a little working as a cook making lots of hot rolls and desert this summer as a part time job.
There seems to be a better survival rate with surgery, and i am guessing until I talk to my Docter for regular apppointment the 26 and new blood work he will be going over everything, If not i will not leave until we have had a discussion of all possible options and where I am at in my journey. Any comments appreciated and I will continue to update. My CA 125 went from 8 to 12 not such a help in determining what was lying on my bladder and my blood work had only better results than the one I had when i was in remission!!! boy am I confused are those reports just useless or what? If he had not felt the mass on exam, there would have not been any discovery at all!!!
Thanks for listening, hope to hear from you,
Thanks, Carm!
Jeanie

Thank you very much. You are an angel from God for all with whom youhave contact. Thank you for all you do.

Hi, Carm this is Jeanie getting back to you with my biopsy results.
It is as I feared the high grade cancer variety is back.Mayo confirmed Cabell Huntington's findings. I do not have a copy of that report yet since it was faxed to my doc office. I start Chemo on the Sept. 9th.I will know more about the meds and everything once these are authorized through medicare. I will have have more questions for you as soon as this all gets organized. So good to have you as a resource. I need you in my corner as well, to run things by and help understand things. I do not want this thing to take a hold of me unknowing. Since this is my 1st recurrence and I already know how to take the meds. and what to expect, etc. it won't be as confusing to me. Thanks again for your generous time, I know that it is sometimes hard to offer when you have a busy professional life going on besides. All my best, jeanie

Carm,
thank you sooooo much for the quick reply and assurances.
The CT scan was done three weeks ago that I was speaking of.
They were comparing it to the one done last August where there was no evidence of masses.
I will be back in touch with the finals on the Mayo report. You are so wonderful to take the time to help all of us here, Carm!

Hi, Carm
I am just now getting back with an update to the biopsy I had been discussing with you a couple of weeks ago. It has been two weeks tomorrow since the procedure was done in Huntington, WV
I finally broke down out of impatience and called the ONC nurse at my docs practice. She said although she had received that report from Huntington the same day they had the slide and biopsy report sent to Mayo for comfirmation and further identifications. Is this common? I asked her why and she said perhaps they did not know completely what they were looking at down there, and needed a more informed opinion.
In the CT scan it says there is a heterogeneous mass in the pelvis along the dome of the bladder to the right of the midline of 6.9 x 4.7 Is this large in medical terms? Since I have the history of the ovarian cancer in feb of 2012 stage 3 high grade, they are suspecting this for a neoplastic process, (regrowth?) or reocurrence? Also additionally, a 4.4 x 2.6soft tissue mass closely adherrent to a small bowel loop in the lower pelvis suspicious for adenopathy or recurrent neoplasm. Neither not present in the prior August CT scan. So that is what I am working with here.
Is there any slim chance this could only be fatty tumors? Or even slimmer that something of unknown source perhaps even a gauze or something was left during closure of the main operation. With all my blood work being perfect, and CA125 of only eight how can this be reocurrence? I am feeling rather well on top of this. No other alarming symptoms what so ever. I should have some comfirmation by the end of the week the nurse says. She called mayo and the path now has my report working on it they said.
thanks for reading, I will let you know when the report is confirmed.
jeanie