6.5 Months Post-Treatment, Wanted to Share Good News!

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Hello all. My name is Tara, I’m a 44-year old female (almost 45 this month!). I am from and live in the U.S.  I was diagnosed with base of tongue cancer in late-April 2023. I had a 2.4 cm tumor on the right side/base of tongue, with metastasis to one lymph node on the right side of my neck. HPV Positive, P16.  It’s a long-story of how I arrived at my diagnosis, but I’m very thankful to have received treatment right away.

Let me just say that I have been following this discussion forum for many months, hoping I would be able to one day chat with you all. I have read and followed everyone’s comments and updates, along with your positive support and encouragement to so many! God bless everyone here! You have helped me through many dark days. I hope my story here can help even just one person.

I have a wonderful oncology team here. I started my treatment right away, June 12, 2023. Surgery wasn’t really an option. Because of lymph node involvement, I was prescribed 35 radiotherapies and 3 rounds of chemotherapy (intended to have Cisplatin). A few days before starting, I was informed there was a massive shortage of Cisplatin, and they had none to give me! Whew. So scary. I ended up receiving Carboplatin infusions for 4 Days during chemo weeks, which were every 21 days. Additionally, I had to wear a chemo ball of 5 FU (Flouracil) for 24 hours a day, on those same days/cycle as the Carboplatin. Treatment lasted 7 weeks. I finished every single treatment. I did something called cold-capping, which helped preserve most of my hair. I’m very thankful. A ton of it burned off with radiation, but it’s slowly growing back.

I was so scared when I started, but once I got in my routine, I just kept determined to get it over with.  It is a daunting treatment.  I had to take my anxiety meds every day when going on the table. I managed to keep my calories up as instructed, through eating/swallowing on my own, no feeding tube. It was awful, but I was inspired by Hazel’s advice that food is fuel. She is right, and so many others here provided such great advice.  I managed on very few pain meds, a liquid codeine, but really only used it weeks 4-7, and sporadically at that. I did fine on just Tylenol for awhile, but I knew I had the pain meds if I needed them. It is so important to stay on top of the pain. And the nausea! I know that this is just my experience, it is so very painful and my doctors were ready to prescribe anything I needed at any time.  I was pretty padded (overweight) when I first started, and I had tons of inflammation. I lost 36 pounds and I’m okay, Back to my baseline weight before getting sick (started feeling sick in 2022).

The first 3 months after treatment were extremely difficult, I could barely talk, eat, or swallow. The mucous production was horrific! For weeks! I wasn’t ready for that. The fatigue is crushing. I managed to go back to work just 6 weeks after treatment. Here in the US, our medical leave is only 3 months, which I started when I started treatment. Your job is only legally protected here for that time. And it’s unpaid unless you have personal time built up or your employer pays you. Some states offer a portion of pay while on leave, but mine does not. Awful! I work for a wonderful employer who has really worked with me to provide accommodations. Right now I’m only working 32 hours a week, down from 35. I’m very tired.

I had a PET scan 8 weeks post-treatment. It showed a hot spot on the left side of my neck (I did not have cancer there before treatment). But, all of the cancer that was treated on the right was totally gone! Praise God. Needless to say, i was happy, but also devastated about the hotspots. However, I remember Dani saying that inflammation can cause hot spots. I was immediately sent to my ENT. He did not see anything abnormal.  I had a CT scan 4 weeks after that.  No cancer!!! Just inflammation, and it’s decreasing. I’m so thankful!! 

I started feeling better pretty good around November. However, I’m learning this recovery is not linear.  I’ve had a lot of ups and downs since December. I’ve developed oral  thrush I think 3 times since last summer, it’s no fun at all. You guys are right, only Fluconazole works! Currently getting over my third infection. But, developed a pesky UTI recently as well, and on some strong antibiotics, which can lead Back to more thrush! Ugh. 

I resumed eating a lot of things that can be painful, coffee, breads, (some) chocolate. No tomatoes and no fruits, they still burn. If I eat things I shouldn’t, my throat is sore. I get sore throat in general time to time. The ENT says that isn’t abnormal, but I would be lying if I said it doesn’t scare me.  My next scan isn’t until May. The doctors informed me that they will need to start checking my lungs on the next scan, apparently there is a low risk for lung cancer based on my treatment.  I really do wonder if what I’m feeling sometimes is all normal, but my oncology team is available to me anytime if needed. They don’t seem worried.

Overall, I feel okay, not great, but not sick. I think I thought I’d be back to normal sooner than later, but more than six months out, I’m so so tired. Working, I’m sure contributes to that.

I married my husband in a very small ceremony in late 2022 before I was diagnosed.  We planned a very large wedding for August 2023, but clearly that didn’t work out. We are re-scheduled to have our big wedding in July of this year. Again, just so so thankful.

I got all of the side effects we read about on here. I felt like mine were so intense. The mouth sores, dry mouth, thrush, crazy sore throat about week four, and ongoing constipation. The nurses are amazing and provided me with everything they could to make me as comfortable as possible.  I now have neck fibrosis  snd lymphedema, they say it’s permanent. I can feel it every day. I go to physical therapy weekly until I get it more managed.

I don’t know what the future brings, for now, I’m enjoying the results of my last scan.  I can’t live in the worry of what will happen at the next scan. Im so grateful just to see the sun shining each day.  I have a good support system and hope sometime I can give Back in a way that will help another person.

This group has been so amazing, I can’t thank you enough. I only wish I could’ve posted sooner, but there’s just been a lot going on.

Thank you everyone! I wish you all the best in each of your journeys.  It’s very difficult, but it does get better.  You can get your life back. Just trust the process. It sounds like you have an amazing medical system in the UK! Best wishes-Tara 

  • Hi Tara well done finishing your treatment, it sounds like you are doing well, in your recovery, it does take a long time to fully recover, as it's often said on here, it's a marathon not a sprint. It's good that you have posted because posts like yours do inspire those who are coming along on in their treatment or in recovery, it shows that there is a good life to be had after treatment. You're right we do have a great medical system (NHS), Its staff are wonderful and work tirelessly, in looking after us. Stick with us and post or ask anything you want; we are all here to help each other. Hope you have a lovely wedding in July, and a long life together.

    Ray. 

  • Tara

    Oh my! thank you for posting your update. It's so honest and encouraging.

    This disease and its treatment is indeed a roller coaster with our bodies and our minds. Fluorouracil is absolute rubbish so well done on getting through that. Did you have to cold cap for four days? sorry....I can't help but ask.

    It's going to be a while before you're really fit and well but crack on and you will get there. I posted my five years elsewhere in the forum. It's a day I never thought I'd see at the beginning, but here I am alive and well

    Best wishes for your upcoming wedding party. I think sending us a picture will be in order, eh?

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Ray! Thank you so much for your kind words. I know you are so helpful to others on this forum. How are you doing and feeling? Is is extremely cold over there this time of year? I hope your week is starting off well :) I’m so happy to read your encouraging reply, and also happy for you that you have NHS. They sound so wonderful. I may post questions on here occasionally, I feel like I always have so many questions. I often wonder if my extreme tiredness or feeling a bit run down sometimes is normal. You know, all the things. I hope you have a wonderful day! 

  • Hi Dani! Thank you so much for your reply :) I really do hope putting out information on here will help someone. I found this forum in the early days of my diagnosis, and it was a life saver.

    You are right, Flouracil is rubbish! The worst. And wearing it for 4 days straight took its toll. Some days, I honestly didn’t think I could do it. My husband took me every day and was with me every step of the way. I’m very blessed.

    My husband also was my cold-capper. There’s no way I could have done it on my own. The nurses cannot assist. Cold-capping was only done for me during the Carboplatin infusions. My infusions lasted anywhere from 30-60 min. The cold caps have to be changed every 25 min during infusions. Then we rushed to get home (20 min drive) and then we would have to cold cap another 3.5 hours at home! Whew. The caps are frozen by dry ice, at -30 F. I would sleep sitting up after chemo until my capping was done for the day. The company I used is based in London! Penguin Cold Caps:)

    Congratulations on 5 years! That is, phenomenal! I can only hope and pray to reach that milestone. It is completely attainable! 

    For sure I can post pictures from the wedding! And I’m trying to be able to have a few drinks here and there…I love a good Bourbon drink, but it just burns! I’m currently tolerating wine occasionally.

    Just overall, so grateful! Thanks Dani for your encouragement:) have the best day! 

  • Hi Tara

    T2N1M0 Tonsil cancer.....finished Chemoradio June 2023

    Well done in getting through the very tough treatment, and for posting such a positive update... it does take time to recover physically and mentally (for both of you) but as you have shown it is very achievable....I was also hit by three bouts of oral thrush ...nasty wee problem to deal with....   Nystatin sent it packing each time....Food? my taste has improved....60-65% now and improving a little each day, had spiced oat coated haggis and peppercorn sauce last night...a definite no no 2 weeks ago.

    We are indeed very lucky with our National Health Service and staff they are an absolute Godsend ....I'm sure your toleration to alcohol will improve and you'll be able to enjoy a wee tipple now and again...I have developed a taste for Guinness 0% alcohol ...often have it with a mildly spiced Indian/Chinese meal....little pleasures mean an awful lot to us .....and our carers

    Best of luck for the future

    Peter

  • Hi Tara, I'm fine thanks, I'm now over 6 years post treatment, I've had my ups and downs, which have worried me, still do from time to time, however all in all I feel well and enjoying life. I live in the Southwest in Cornwall so we don't get very cold weather, but we do get lots of winter storms and rain. Feeling run down and tired, is normal, your body has had a good pounding, and it takes a while to heal itself. You will get there, don't worry.

    Ray.

  • Hi Tara

    Congratulations on getting through your treatment. It can be a rough ride and you sound as though you are doing really well. It does take quite a while to really get back on your feet and it is a shame that you had to go back to work so soon. I also found that  fatigue was one of the hardest things to work through and it was a red letter day when finally I started to regain my energy and then I did not look back.

    Yes it definitely does get better.

    Best wishes

    Lyn

    Sophie66

  • Brill update thank you   Yes some foods can take a long time it’s taken  me five years to be able to say I can eat a tomato comfortably that’s up and down and there is light at the end of the tunnel and well done to you and keep posting and let us know how you get on. Good luck with the wedding this year.

    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Peter! Thanks so much for your kindness! Congratulations on finishing Chemoradiation in June 2023! I wasn’t far behind you, finished 8/1/23. I think we are similar with our cancer staging. 
    Ah, the thrush is terrible! How are you now doing with that? I feel like it just always wants to come back! 
    I’m glad to hear your taste is improving! I really didn’t lose too much of mine; however, things that weren’t so intense before are really intense now! Like for example, anything mildly peppered or spiced. That’s awesome you can have a mildly spiced dinner! With your 0% Alcohol Guinness! That’s great. I hope to try Bourbon by the time of my wedding!

    Thank you so much again. I really hope you are well! Have a wonderful day :) 

    ~Tara

  • That’s so amazing Ray that you are six years post-treatment! I can only hope and pray that six years arrive quickly for me. I totally know the ups and downs that you describe, but I’ve only been experiencing them for a short time.  I’m sure those ups and downs can be very worrying. You are very strong and getting through it! I’m glad you don’t get too much cold weather, but rain can be so gloomy :/ I live in the Southwest US, it can get up to 118 F here in the summers. Whew! But I’m grateful for the sunshine every day.

    thanks for your encouragement. I really do feel beat down a lot of days, so I’m learning this is my new normal.  I hope you have the best day Ray! :)