Advice in hair loss and will I lose my teeth!

FormerMember
FormerMember
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Morning folks! 
I need help...

Scared is not the word right now. I’m starting treatment, (chemo week one and five, along with radiotherapy every day for seven weeks) tomorrow and I have been hit with the fear of so many side effects I really am more scared of that than the treatment. I have been advised with the radiotherapy being so close to my eye I could lose upto 70% vision, the risk to my teeth is extremely high so I’m using fluoride toothpaste, rinse and a guard and I’m going to losing my eye browns lashes and hair patches. I have cried so much it’s unbelievable. All I want is someone to tell me something positive. I know it all sounds superficial as I am alive and they are saving my life, however I’m very much by myself on this journey and too be told all the side effects makes me feel so anxious. 

Any positive experiences or advice would be appreciated, it’s hard to stay strong. 
x

  • Hi Nightsky, and welcome to our community. So sorry you're here but there is lots of help at hand so stay with us.

    What sort of cancer do you have, because there are various threads running on different ones and I'm sure folk will chip in.

    The fact that you are alive and being cured really doesn't cut it for a while so we all know how you feel. Frightened and out of control. Side effects don't kick in all at once and pain is manageable. Take comfort from friends and family and take any help you are being offered.

    It's a hard trip but you don't have to be strong. It's OK to feel bad. 

    You will get there one day at a time.

    I am 2 years plus out of radiotherapy for tongue cancer. Life is good and I remain in remission.

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • FormerMember
    FormerMember in reply to Beesuit

    Morning, thank you for the reply. I was diagnosed with Sinus cancer in February, after 7 months of being told it wasn’t cancer, so it was a total shock. 

  • Hi Night sky welcome to our small community. Sorry you find yourself here. Do you know which chemo you will be having? I had cisplatin and didn’t loose any hair. There’s a few in here with sinus cancer hopefully they will pop on later 

    Its a scary feeling but the treatment is so targeted now. I am almost 3 years post treatment for tonsil cancer with several affected lymph nodes.

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi. If you put Sinus into the search at the top of the page it will bring up threads on that.

    Here's something too get you started

    SINUS CANCER

    I guess you'll lose your hair in places as a result of the radiotherapy but in my experience that does regrow fairly well but your oncologist should be able to clarify there.

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • Hi Nightsky2021

    Sorry about your diagnosis. There are resources for you to reach out to - Macmillan and of course the people here, plus your own medical team. As it is said, take help when offered and keep in touch with your family/ friends.

    I know I was very scared also of all the side effects that may happen when I was going through surgery and radiotherapy.  One thing I can say I just worked my way through them as they came along, like everyone else does, and so will you. Some side effects that I was told about did not even happen. Take one day at a time and any worries you have talk about them. The anxiety is normal but don't keep it to yourself. Keep on this forum through your treatment and post your concerns whilst going through this.  Someone will have probably been there before and will want to help.

    I am wishing you all the best

    Nicky x

  • FormerMember
    FormerMember in reply to Sporty Nicky

    Thank you for your kind words and advice, it really appreciated. 

  • Hi Nightsky2021

    I can't offer any direct advice, but my uncle had sinus cancer diagnosed about 5 years ago at the age of 82.  He had radiotherapy - I am not sure if they gave him chemo as well.   

    He did suffer side effects of the radiotherapy until he recently died (NOT of the cancer), but these were very much like any treatment involving radiotherapy; always something but not seriously life limiting. 

    He had a "mucky nose" which continued to discharge a blacking mucus and had some eye problems which gradually got worse over time.  That said, he had a long standing issue with glaucoma so that was probably the real issue rather than the radiotherapy.

    He did manage to retain a good head of hair much to his annoyance during Covid lockdowns as he could not get it cut!!

    Peter
    See my profile for more details of my convoluted journey
  • FormerMember
    FormerMember

    Before my treatment I had all my teeth taken out. Since you are starting tomorrow and havent had them taken out, I dont suppose they will come out. I have had many 'side' affects and still have them five years on. The problem I have told my doctor is, that everyone gets the same treatment to stop the cancer or stop it coming back. People are not the same, some need more some need less. I believe I was over radiated. No one tells you in advance what to expect least of all the doctors. For that you have to come here to find out. As you say it is a choice between staying alive or not. Sometimes one thinks it may be better not to. The doctors like me because I am positive about it even though I suffer a lot. It may be better not to know them in advance, I certainly didnt. But I can say that I dont get new ones although the 'old' ones can get worse, mine have never gone better. Stay on here you will learn more than any doctor or nurse can tell you and it will be the truth by people like me who are going through it. 

  • Stay on here you will learn more than any doctor or nurse can tell you and it will be the truth by people like me who are going through it. 

    I can agree there  

    I can say that 2 plus years down the line the remaining side effects are niggles. 
    But I have a cold. The first one since treatment and my sore throat has taken me back to treatment days. 
    Im hopeless with colds. I get girl flu. But this sore throat is something else AND I have just spent nearly 2hours with my mouth wide while my dentist tidied up some RT damage. That’s the longest I’ve ever had my mouth open without talking and I’m in a bad mood. 

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • Good afternoon Nightsky2021,

    I was diagnosed with sinus cancer last year and I am a year post treatment. I had 2 cycles of TPF chemotherapy and then had 7 weeks of radiotherapy with weekly chemo. My weekly chemo was stopped after week 4 due to my white blood cell count was borderline. I was told I could have red eyes as the radiotherapy would be hit close to my eye also. I was also told if my eyesight did become blurred I should report it straight away. I am currently under ophthalmology at my main hospital and my eyesight hasn't been affected . I was referred by my oncologist as I was told I could have delayed side effects from radiotherapy. 

    I lost all my hair during my first cycle of TPF chemotherapy I ended up getting my hair shaved, it is hard dealing with hair loss even though you have been told you will lose it nothing can prepare you when it happens. My eyelashes have come back but are still short, eyebrows have not come back fully, the only hair on my eyebrows are the ends where the radiotherapy wasn't aimed. Some people end up having them microbladed, I currently just draw in my eyebrows. I have had positive news in regards to the lump is no longer there but my frontal sinus is something they are currently keeping an eye on so I am being scanned every 3 months at the moment. I have been told if there were cancer cells left behind this would have showed up or I would have experienced symptoms after treatment was completed. 

    It's good you are on fluoride toothpaste, rinse and guard. I now have to use a sinus rinse as my nose doesn't work the same way anymore and I do suffer with watering eyes but these are little things I can deal with even though it is annoying. I am just grateful I responded well to the treatment. Just listen to your body and tell the radiographers everything you are experiencing as they can suggest things or let your team know. I did find the last few weeks of radiotherapy tough and did struggle with eating and drinking but everyone is different in relation to how they react to the treatment.  

    Tanya