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Thank you so much for this reply. A wealth of information. Mike has since gotten a PEG tube, on Wednesday. Thursday was such a great day! Got some good calories in, carefully and in small amounts, Then the anesthesia/pain meds for surgery slowed his GI motility and blocked him up. Yesterday was pretty miserable, but interestingly our loal surgeon who put in the PEG, suggested 60 mls of sesame seed oil. We ada that about 8 pm last night, hoping it will work soon and we can get back on track.

What was the protocol for your first post-treatment follow-up? How long has it been since you were diagnosed? MDA wants an 8 week CT Neck/chest w/wo contrast and labs. I think we are going to accomplish that first f/u here in FL, and go back to MDA for future f/u intervals.

Again, thank you so much for your informational and canded reply.

RE: My post. seems to have disappeared

by MEG97 - September 28 at 1:56 PM

Thank you!

On Sep 24, 2019 7:11 AM Sdurnell wrote:

ME,

I am so sorry that your husband was not better informed about the consequences of decisions and the recovery from this cancer treatment.  And that it could happen to a physiscian only underscores the seriousness of this lack of informatiuon--it happens to far too many patients.  I was one of the lucky ones in that my doctors were very forthcoming and patient with my questions.

Usually radiation keeps making us feel worse for several weeks after treatments end, so he is in the very beginning of the recovery process.  Most of us have the symptoms you mention after radiation.  Sometimes they last a long time; while other folks are luckier and have a shorter recovery.  And for some, maybe most, there are permanent effects.

So he has survived the brutal treatment, and is now on a long, slow recoverry.  My mucositis was not too bad and didn't last very long, and my neck soreness didn't either, although it was very ugly.  But some people suffer from this for a long time.  Having no taste buds at this point is much better than having everything taste horrid.  I got over the terrible taste after several months, but did not start getting correct taste back for about a year.  After two years, most things were tasting good.  Now, nearly 9 years out, the only things I can't tolerate are hot chiles;  wasabi and horseradish are fine.

Heavy mucus usually increases after treatment ends, but most of us suffer from it for only a month or two.  For some, however, it's a chronic problem.Nausea "" target="_blank" rel="nofollow">http://problem.Nausea " target="_blank" rel="nofollow">problem.Nausea is not as common at this stage; he might want that medicated to help with nutrition.  I used ondonsetron during radiation.

Feeding is often an issue.  I am 5'3", and lost 36# despite having a feeding tube placed partway through radiation.  Many of us find regaining weight difficult;  it took me several years to regain a healthy weight.  A healing body requires lots of calories and protein, and I found that smoothies were the ticket, first for maintaining my weight so I could remove the tube, and then to start regaining some.  I used plain Greek yogurt, berries, fruit, spinach, and ground nuts.  You could also use peanut butter.  If you make them thick enough they may make aspiration less likely;  it's often commoner with thinner liquids.

I hope he is taking meticulous care of his teeth, as radiation can do quite a lot of damage to them.

So, patience is the key here.  Take note of small improvements, and celebrate them.  Most of us get to the point where we don't think a lot about our cancer anymore, but it can take several years.  I still have reduced saliva after all these years, but it is much better.  There are still some foods I don't eat for this reason.  My throat has a stricture that needs to be dilated sometimes, so I have to be careful to take small bites.  And  had all my teeth pulled due to gum disease, so I have some problems with the dentures. I am also starting to experience late radiation effects, mostly my voice quality, which is failing just as my husband is losing hearing.

But life is good.  I am retired and enjoying travel and lots of gardening and reading.  At 67 there is really nothing I want to do that I can't do.

Best of luck to both of you.

Susan

Hi Susan,

Thank you so much for your very thoughtful and detailed response. I never received the notification, and could not even find my post on this site. I just googled about tecovery and your response to my post popped up! That's how I found your response. Guess I need to learn more about navigating this site.

Mike finally gave in and got a feeding tube Wednesday. It has already made all the difference in the world. Finally, I can get nutrition in him. He is now 40 pounds down, a 5'9" man who has catabolized his muscle and now weighs 136 pounds. 

We are having issues also communicating with MDACC in Houston about f/u intervals and what to expect. While grateful for access to MDA, their focus seems to be very heavy on emotional wellbeing and very casual towrads staging disease and beginning treatment. Now there is all sorts of confusion regarding f/u tests and intervals. Our understanding from our Radiation oncologist was a CT w/wo contrast neck and chest at 8 weeks, and a PET CT at 12 weeks as per their protocol. Now they are saying the PET CT is only performed at 12 weeks if the CT shows an anomaly. 

Anyway, even for a surgeon like Mike, this is new territory and far from his field of expertise!

Very encouraging to read of your recovery and long-time cancer-free status.  Thank you so much for responding.

My post. seems to have disappeared

by MEG97 - September 27 at 3:17 PM

Does anyomne actually still use this forum? I posted with some important questions and gave details about my husband's oropharyngeal cancer & treatment, and the terrible side effects, and posed questions I needed answered timely. Accidentally posted on the throat cancer instead of H&N, but then copy-pasted and started a new post with it on H&N, which seems to be busier. Cannot find either of my messages, and have had zero response. Hoping admins can help, since you review all messages before making them live.

Chemo/Radiation Time to Recovery

by MEG97 - September 23 at 4:16 PM

I accidentally posted this in a less-busy forum specifically for tonsillar cancer. I am repeating it here, hoping for timely advice:

My husband was diagnosed with HPV16 Oropharyngeal Squamous Cell Carcinoma on June 24, 2019. He is (was) a very active, fit 65 year old orthopedic surgeon who had no symptoms until June 11. He was working in NY, and following a mild sore throat, he felt a fullness in his left tonsillar pillar. The following morning, he woke with a painless crater in his left tonsilar pallate.  He returned home on June 19 & we went straight from the airport to an ENT. The ENT thought it was cancer. He biopsied it, sent Mike for a CT w/contrast on 6/21, and the biopsy results on Monday were positive. By Thursday 6/27, we were sitting in our first consult at MDACC.  His was a locally advanced tumor with involvement of the contralateral retropharyngeal lymph node. T2, N1. His creatinine level was too high for them to administer Cisplatin, and so his first chemo, on July 17, was Erbitux alone. The other 5 chemo infusions were dual, Erbitux & Taxotere. He underwent 33 Intensity Modulated Proton Radiation (IMPT) treatments at MD Anderson Cancer Center in Houston, TX, spanning from 7/15 - 8/30. 

Long story week by week, and if anyone at all wants details you believe will be of benefit, I am happy to anyswer any questions. Right now, we are 4 weeks and 5 days post-chemo and 3 weeks 3 days post-IMPT. We need HOPE! This far out, he still has terrible mucositis and a very very sore throat. His neck was weepy, raw, and produced that foul yellow exudate for weeks, but it has finally healed. His taste buds literally washed down the hotel sink somewhere around week 3. His tongue is still raw and painful. His throat is tightening. He is 5'8" and has lost 30 pounds at this point. He did not elect to have a PEG tube, or heavy duty narcotics.  He still struggles with nausea and must be very careful not to aspirate. Please could someone(s) who has been through similar post-treatment symptoms give us some idea week by week going forward, what to expect? He desperately needs a light at the end of the tunnel!

Incidentally, he now realizes that this torture goes on far longer than the 7 weeks of treatment, and in retrospect he wishes he had gotten a PEG tube so he could have kept up his nutritional status much easier.

Hello everyone,

My husband was diagnosed with HPV16 Oropharyngeal Squamous Cell Carcinoma on June 24, 2019. He is (was) a very active, fit 65 year old orthopedic surgeon who had no symptoms until June 11. He was working in NY, and following a mild sore throat, he felt a fullness in his left tonsillar pillar. The following morning, he woke with a painless crater in his left tonsilar pallate.  He returned home on June 19 & we went straight from the airport to an ENT. The ENT thought it was cancer. He biopsied it, sent Mike for a CT w/contrast on 6/21, and the biopsy results on Monday were positive. By Thursday 6/27, we were sitting in our first consult at MDACC.  His was a locally advanced tumor with involvement of the contralateral retropharyngeal lymph node. T2, N1. His creatinine level was too high for them to administer Cisplatin, and so his first chemo, on July 17, was Erbitux alone. The other 5 chemo infusions were dual, Erbitux & Taxotere. He underwent 33 Intensity Modulated Proton Radiation (IMPT) treatments at MD Anderson Cancer Center in Houston, TX, spanning from 7/15 - 8/30. 

Long story week by week, and if anyone at all wants details you believe will be of benefit, I am happy to anyswer any questions. Right now, we are 4 weeks and 5 days post-chemo and 3 weeks 3 days post-IMPT. We need HOPE! This far out, he still has terrible mucositis and a very very sore throat. His neck was weepy, raw, and produced that foul yellow exudate for weeks, but it has finally healed. His taste buds literally washed down the hotel sink somewhere around week 3. His tongue is still raw and painful. His throat is tightening. He is 5'8" and has lost 30 pounds at this point. He did not elect to have a PEG tube, or heavy duty narcotics.  He still struggles with nausea and must be very careful not to aspirate. Please could someone(s) who has been through similar post-treatment symptoms give us some idea week by week going forward, what to expect? He desperately needs a light at the end of the tunnel!

Incidentally, he now realizes that this torture goes on far longer than the 7 weeks of treatment, and in retrospect he wishes he had gotten a PEG tube so he could have kept up his nutritional status much easier.

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About MEG97

Caregiver
Head and Neck Cancer
After Treatment, Cancer Nutrition, Diet, Emotional Support, Radiation, Recipes, Side Effects, Spiritual Support

I'm a 58 year old woman whose husband was diagnosed with OPSCC HPV-16 in June, 2019. He underwent 7 weeks of TX at MDACC in Houston. Chemo = 6 Erbitux, 5 Taxotere, and 33 Proton Radiation TXs. Seeking all kinds of information regarding these first months post-chemo & Rad, and would so love to hear from long-term survivors of HPV+ throat cancer. All recovery tips greatly appreciated.

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