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Janey6's Message Board Messages

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RE: Lost Cause

by Janey6 - June 27 at 6:36 PM

On Jun 21, 2019 5:24 PM PFFlyer wrote:

We have just been told that my husband has two months to live.  He and I, have battled primary liver cancer since February of 2017.  I won't go into everything that has gone on/and or happened but it looks like he is losing this battle.  I just have to share what happened recently at one of his oncology appointments.  In discussing, the prognosis, I expressed that we will continue to fight.  The doctor looked at me and said Mrs.-----, you need to just give up and consider your husband's comfort.  My husband who is an extremely positive person and has managed this disease with much courage and hope, was deflated.  He did not want to know that he only has two months to live, he prefers to live each day with a positive approach.  He's not stupid, he just doesn't want those words to be in his mind every day for the rest of his life.  His affairs are in order so there is nothing left to prepare. I am so angry with these doctors that they believe every patient needs to be told to their face that they are dying. This is not my husband's personality!  I've been married to him for 51 years.  I asked the doctor to share with me what to expect and though all the paperwork gives me the authority to discuss all aspects of my husband's medical, the doctor refused.  He would only talk to the both of us.  Angry, Angry, Angry!

How sad that is! You know your hubby better than MD! Those docs want to control everything. He may have felt you would keep info from his patient, your hubby. Their first duty is to patient. But they should also be aware of sensitivities....this person clearly wasn’t. You know, Hope is a beautiful gift. If has propelled people way beyond limits predicted by docs. He’s so lucky to have you. It’s a terrible disease. My hubby had pancreatic. Janey

RE: mouth sores

by Janey6 - June 21 at 3:46 PM

On Jun 16, 2019 12:43 AM Hazeth wrote:

I was diagnoised with stage 4 colon cancer April 2018. I have several side effects from my chemo treatments, runny eyes and runny nose, and neurophy of my hands and feet. The one thing I am having most problem is dealing with are mouth sores. My doctor has prescribed the Miracle Mouth it only helps for a short time. Any suggestions?

My husband used Viscous Lidocaine before eating. Also lasts a short time but enough for him to have dinner. You’ll need a Rx. It’s almost tasteless clear liquid. Kind of thick and we used a long Qtip to apply. It’s a tough situation.......try as many suggestions as you can stand. This worked for my sweetheart. Janey

On Jun 19, 2019 4:35 AM ToddlerFather wrote:

Chemo is used to name drugs so different as cytotoxins and targeted therapies... so the first thing to tell her is that every drug is different, and every patient reaction to a drug is different. 

If, as expected, she is taken out of the trial, are the doctors suggesting something she had already taken in the past or something new to her, even if something old ? 

And while I think the best line of action is to not stop conventional treatments, some alternative treatments that could be considered for her care:

- Raw vegan diet plus wheatgrass juicing (Hippocrates / Tree of Life / Gerson)
- Low Dose Naltrexone

- Alpha Lipoic Acid

- Dichloroacetetic Acid

- Paw-paw

- High-dose vitamin C (usually IV)

- Frankincense

Note that not all such treatments are compatible with chemo. Some are, some not... and the preference should be to keep chemo, not to any alternative treatment. 

I did 4 of the above alternative treatments, with one of the 4 having a remission effect on me... but my primary cancer and metastases site are too different from your mom's for you to rely on that for anything. 

Godspeed!

I’m happy to hear your mom has someone to advocate for her. And care for her in a loving way. It means so much to have an accomplice in the fight against this badass disease. My husband got some relief from his ascites when they “tapped” his abdomen. Once they got out 6 liters of fluid. It’s a comfort measure and the fluid does come back but he had less pressure on diaphragm and respiratory status improved. He also wore elastic stockings and elevated legs as often as he could. It helped with swelling. Best regards, Janey

RE: Stage 4 Rectal Cancer

by Janey6 - May 09 at 10:22 PM

On May 08, 2019 11:25 AM RomeoJasper wrote:

Hello All! My husband was diagnosed Stage 3 in October 2013 first Colonoscopy at age 50 Stage 3 Rectal Cancer. 6 weeks oral chemo and 25 sessions radiation then surgery and tempory ostomy. 9 month later they reversed his ostomy and 12 more weeks of chemo. March 2018 mets to the liver, 2 masses. 25% of liver removed the other mass they did ablation, Jan. 2019 mass found just above the pancreas inoperable. Just finished his 6th week of chemo (4 different kinds) and 1 week in hospital so they stopped the Panitumumab last treatment on 4/30. He had his CT Scan done on 5/3 tumor shrunk from 21 mm to 11 mm so tomorrow we see the surgeon again to see if he will be able to do surgery now. They are saying it is in the lymph nodes just above the pancreas attached to a major blood supply vessel so he didn't feel he could get it all and it would continue to spread, that is why the chemo was started to try and shrink it enough to get it of the vessel. When we saw him last time he said he would most likely remove the head of the pancreas and possibly end up doing a Whipple procedure. When I asked I was told Rectal Cancer will not spread to the pancreas has anypne else heard this? I guess I 'm confused as to why all this needs to be done if the cancer is not in the pancreas. We were also told he will never be cured and will contine to scan every 3 months. Does anyone know much about the CEA tumor marker blood test? My husbands through out all his cancers has remained at 0.8 completely normal, on 4/30 it came back 2.8 still in the normal range but the highest it has ever been since 2013. He was also move to a Stage 4 with the liver mets. Thanks for listening and comment would be greatly appreciated. Happy Tuesday.

Lisa

Hi Lisa, It sounds like you and hubby have been through a lot already. The positive lymph nodes on top of pancreas may be the reason they want to remove head of pancreas. That’s the problem my husband had. Tumor was around major blood vessels...he wasn’t candidate for Whipple as he had metastasis all over. After the Whipple, it’s a big surgery, chemo is suspended to allow healing...I think that may still be the protocol, so the tumor has to be contained and/or removable. Good luck with the surgeon.....even if he can’t get Whipple he can keep cancer within limits to have a good quality of life. Janey

On Apr 08, 2019 8:41 AM NJM01 wrote:

An interesting and by turns, positive yet confronting read: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6258135/ "" target="_blank" rel="nofollow">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6258135/ " target="_blank" rel="nofollow">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6258135/ I’d be keen to hear from the 5+ year club on how they read this and relate to its comments about longer-term dysphagia in particular. The longer-term survival stats seem to suggest (rounded-up) that non-smoking HPV/P16+ patients have odds circa 70% but there does appear to be a decrease in overall survival over time. This accords with other articles I have read that suggest the initial survival benefit conferred by HPV/P16+ does continue but diminishes the further out one gets from the date of diagnosis. Subject to my next PET scan in September being clear, my oncologist is very confident that I will make the 5 year “cure” mark. As a 45 year old however, I do wonder from time to time whether I will see 60... In any event, I’m living for now and grateful to be alive! Stay strong, N
Just be careful of swallowing problems as time goes by. My hubby had several aspiration pneumonias after 5 yrs NED. Fibrosis seems to keep forming. He had to get tube after 5 yrs. RT, a gift that keeps on giving. HPV+ cancer is less aggressive. Most cancer centers are using less intensive RT because the side effects are worse than chemo.....and they continue forever.
Hello Barn, I hope you’re feeling better. Of course the decision to continue treatment is yours to make. The side effects of chemo can usually be managed with good medical care. My husband found that Zofran helped greatly with nausea. I’m sure your family and friends would like to have you in their lives for as long as possible. Best wishes to you. Janey

RE: Getting my voice back

by Janey6 - March 07 at 4:51 PM

On Mar 05, 2019 7:28 PM Marmaduke wrote:

Hi everyone: I’ve been posting on here for about four years now and wanted to share this with others that are having difficulty speaking after radiation to the neck and tongue areas. I had 4th stage HPV+cancer BOT diagnosed in May of ‘15. After 35 radiation treatments and 6 chemo treatments, I have been cancer free to date. I’ve had s few scares with doctors saying my cancer was back only to say, ooops, sorry we don’t think it’s cancer after all. Crazy times for sure. But so far so good. I’m 70 years old and have been on a feeding tube most of the last four years. Ended up being hospitalized for a week during my last four radiation treatments I had lost so much weight, 60 lbs. it’s been tough for sure. I lost my voice a couple years ago and could barely speak above a whisper. I finally was told by a ear nose and throat specialist she could help me. In October of 2018 I had a procedure where she injected a synthetic substance into my affected vocal chord which propped it up tighter against my “good” vocal chord causing my voice to be louder when I spoke. It was done In her office with very little discomfort to me. I had great success with this procedure but just had to get it a second time as it is not permanent solution using the synthetic stuff. It lasted about 4 months the first time. I can get it done permanently as an outpatient where they will take some of my own stuff from my hip and inject it instead of the synthetic stuff and it is supposed to be a more permanent solution. Sorry for the long story but wanted to offer my experience to those of you who have lost their voice as I had from the radiation damage. I got do much support from all of you here, I wanted to offer this to anyone that may not have tried this to regain their voice. Blessings to you all, Donna
Wow! So many post radiation patients with feeding tubes. My husband also. He was HPV +. Has anyone heard or seen studies that offer treatment of Head and Neck cancer with less radiation? I've heard that MD Anderson is offering something that may reduce awful side effects of radiation. Of course it is for certain pts, I'm not sure what the criteria is. I've also read that University of Pa does a robotic surgery to remove tumor then RT and chemo. But RT is less. I'm sorry we didn't go with Dr Omalley at Penn. He was the only MD that warned us about long term side effects of RT to throat area. MSK never spoke about RT side effects, PEG tubes, swallowing issues. Not being able to eat or drink for the rest of your life seems like something they should apprise you of. My hubby is young 50.....a young 50. We have been all over trying to find someone who may do throat reconstruction. Major ENT centers, plastic surgeons, etc. That fibrosis can't be fixed. Any comments on RT reduction or knowledge of throat reconstruction are appreciated. Janey

RE: cisplatin and hearing loss?

by Janey6 - February 14 at 5:13 PM

On Feb 14, 2019 3:56 PM KyGal_KY wrote:

Oh Yea, cisplatin is well known for causing tinnitus and hearing loss.  I was diagnosed with base of tongue cancer in 2011 and went through 3 rounds of "induction" chemo using a cocktail of 3 drugs, one of which was cisplatin.  I already had some ringing from everyday life, but within the year it got pretty noisy.  Between my hearing loss and the ringing I went to hearing aids.  They help with the ringing as well as allow me to hear better.  Most hearing aids have a function to mask ringing if it really bothers you.  Fortunately, I seem to tolerate the "crickets" in my ears pretty well.  They sing me to sleep every night.   

Very very funny. I’m telling my husband that.

RE: Downsides of Radiation Treatment

by Janey6 - December 13 at 11:29 PM

On Dec 11, 2018 1:32 PM RoboDobo wrote:

I had a radical prostetectomy done...my friend had radiation treatment for prostate cancer. He has had a host of issues, years later, having to do with tissue damage in the urethra (sp?), blockage and other damage stemming from the radiation treatment. You need to seriously consider your options....I almost went the radiation route, but was warned about the potential aftereffects. My friend my end up, permanently, with a urine bag that goes directly to his bladder; that he will have to empty for the remainder of his life.

My husband can’t eat or drink at all now. Seven years ago he had 70 Grey IMRT for SCC of tonsil. He was fine until 8 mos ago. Fibrosis built up in his throat over the years. He now had a PEG tube. RT, the “gift” that keeps on giving. Many post Head and Neck cancer patients are saddled with this outcome. ..........We’ve been told that the focus of Tx is to de-intensify the RT now. Too bad my hubby missed that boat. It’s a higher price to pay. Yes, Ca free but he’ll never eat or drink again. Aspiration pneumonia lurks. So end of story....better less RT maybe more chemo or something like Optiva or Keytruda.

RE: Spread caused by biopsy

by Janey6 - October 25, 2018

I hope the “circulating” cancer cells can be irradiated by chemo. Pancreatic tumor is NEGATIVE. Lucky you. You needed that Bx. Best wishes to you.
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