Tonsil cancer w with lymph node involvement

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PKDTV
PKDTV Member Posts: 24 Member
edited May 2023 in Head and Neck Cancer #1

Hi all,

I would like to introduce myself and say HI to everybody. I am 41, male from European country called Poland. I was diagnosed recently with left tonsil cancer with lymph node involvement. Today I was told that my treatment will be radically and will take 7 weeks of radiation and 2 chemos. My cancer is HPV related and doctors told me its bettet for treatment. I will start radiation within two weeks time and I am really, really very affraid what is ahead of me. To be honest I am scared a lot. At present my condition is very good, I feel completly normal and look the same only apart lump on my neck. I think I could caught HPV like 20 years ago when I was young and I am blaiming myself now. I got my wife close to me and supporting a lot in this difficult time. I cant even think now how my future will look and what is going to happen. Even with good prognosis its really hard for me to switch on my mind on positive way of thinking. I hope it will change but its really hard.

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  • wbcgaruss
    wbcgaruss Member Posts: 2,323 Member
    edited July 2022 #2
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    Well, hello and welcome to the CSN H&N forum, as we say the place no one wants to be but they are in good company and help here.

    Your doctors are right the cure rate for HPV+ is very high.

    My guess is you are going to have a radical neck dissection since you have had lymph node involvement and I assume they are taking out your left tonsil also.

    I know you are scared but try to work your way out of that mode and don't panic. It sounds like your doctors have a plan laid out for you and you will get through this and be cancer free because many of us on here have done it before you and are living proof it can be done and the treatment works.

    At present your condition is good, well that's good, you are generally healthy and you will tolerate the treatment.

    Don't weigh yourself down about the HPV it's a virus many of us have and don't know it and i understand can lay dormant, not active for long periods at a time.

    They do have proven vaccines for it now and they recommend anyone get it to protect themselves. Here is a link on the vaccines

    https://www.cancer.gov/about-cancer/causes-prevention/risk/infectious-agents/hpv-vaccine-fact-sheet

    I know you are saying being positive is hard for you right now but I tell you positive is the only way to be. Make up your mind that you are going through this treatment and completing it and beating this and going on to live life without this trouble from now on. I had a nurse navigator for my first cancer and she sat me down and explained what was going to happen with my treatment and she gave me confidence like I am trying to do for you here. She said we are going to treat this cancer with radiation and chemotherapy and we are going in and we are getting that cancer out of there. A positive fighting strong mindset is as important as anything in this treatment.

    I will tell you straightforwardly that this treatment is tough and it is hard on you so you just have to tough some of this to get through. The chemo can make you sick although there are a lot of good antinausea drugs they give you along with it nowadays. Between the chemo and rads, it will make you tired for sure but you will be ok. I don't know what you weigh but if you are not overweight now is the time to eat what you like in high calories and big quantities and put on some weight, you will need it down the road because you will not want to eat because of lack of taste or difficulty swallowing because of soreness and you will have to possibly eat even though you won't feel like it for a while and also fighting cancer requires a lot of calories. Have your doctors mentioned getting a feeding tube put in before you start treatment? My recommendation is if your doctors think you should have one get it. I am pro tube because it makes it so much easier if you have major issues and have trouble eating and taking meds for a while and it is only temporary till you get through this so keep that in mind. You may have pain but your doctors should give you adequate meds for when you do and if you have pain treat it regularly on a schedule and stay ahead of it, don't wait till you are in really bad pain and then take it to stay ahead of it so you make this journey as pain-free as possible.

    Any meetings you go to take a notebook to write stuff down, you can't begin to remember all the details you will be exposed to that you want to remember. Always take a second person with you and luckily you are blessed to have a good wife to help you as 2 sets of ears are better than one. You may even want to video or sound record your doctor's meeting so you can play it back if you are not sure of something later on.

    I am going to stop there, for now, please keep us updated on operations and treatments as you get into them and we can help you with suggestions to make this whole thing easier for you. Remember recovery from the treatment of this H&N cancer is the hard part especially. The treatment is pretty easy to start out with but it adds up and wears you down pretty good. Then when treatment is done it is a slow process of recovery as your body mends itself so think in terms of weeks and months not days and weeks. Although you will feel bad for a while you will hit a turning point and start feeling better again and it will just keep getting better from there on out.

    All I have told you here is not to scare you but prepare you to be ready to face this challenge head-on and come out the other side a winner, cancer free. And I was wondering could you share a first name to connect to you?

    So-Wishing You the Best

    NEGU (Never Ever Give Up)

    Take Care God Bless-Russ

  • PKDTV
    PKDTV Member Posts: 24 Member
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    Thank you wbcgaruss for replying on my post. You gave me a lot of useful information. My name is Przemysław. I am 41 years old. My current weight is 88kg and I am eating now a lot as my per my doctor instructions. As I understood my doctor I will have only chemoradioteraphy. I have asked about surgery but doctors said that in my case is better to do only radio and chemo as it will have same effect as surgery especially that my cancer is HPV related. She told me that I may have a lot of side effects from treatment and some of them will be temporary and other will stay with me till the end of my life. I will have meeting with radiologist soon and he will give me more details about my treatment and will make 3D scan of my tonsil to get ready for radioteraphy. Later I will have meeting with doctor in regards to chemo and treatment should start soon after. They told when treatment will be completed, three monts after they will do scan of my body to check if treatment was succesfull. That is all what I know at this moment.

  • wbcgaruss
    wbcgaruss Member Posts: 2,323 Member
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    Przemyslaw thanks for the updated info and a name. From reading your response I get the feeling that your doctor and medical team are very knowledgeable on this sort of thing and have already made you aware of many treatment factors as well as side effects. I too had the same treatment for my first cancer, throat cancer, and went the same route chemo and rads with no surgery. I was wondering are you getting treatment at a cancer center, a local hospital, or some other way. Also if you will be driving to treatments at some point you may not feel up to it so you may have to get some friends or family members to help you finish up. Thanks for keeping us updated.

    Wishing You the Best

    Take care, God Bless-Russ

  • Mark_M
    Mark_M Member Posts: 13 Member
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    I had the exact same cancer, and in tonsil location and neck lymph node. Just finished treatment 3 weeks ago (3 July, 2022). Treatment prescribed was the same EXCEPT 6 weeks of radiation instead of 7 and at 60 "gray" intensity instead of the standard 70 "gray". I took part in a clinical study.

    My treatment symptoms weren't too bad. Some mouth sores, very little saliva, tiredness, minor sore throat at the end of treatment. I did lose my sense of taste and my appetite and have not regained it at this point. Not even close to needing a feeding tube and didn't have any speaking/vocal cord problems. So, overall, I feel I was very lucky. The sense of taste has not returned and makes it very hard to eat. Everything tastes like a "salty, metallic paste". So I have lost around twenty pounds. No appetite and no taste makes it very hard to eat a significant meal. I get 90% of my calories from drinks like Ensure and Boost VHC (Very High Calorie). Treat yourself to some favorite meals whil e you can and gain some weight. You will lose it. I haven't taste food for 9 weeks now and its very frustrating.

  • PKDTV
    PKDTV Member Posts: 24 Member
    edited July 2022 #6
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    Hi Mark, thanks for your comment. I am starting my treatment on Wedneaday. I had a meeting with my doctor recently and she decided that instead of 2 chemo she propose 6 chemo session every week. Initial plan was in fact 3 chemo - 1 at the beggining, 2 in the middle and 3 at the end. She said that is standard plan for this treatment, but last chemo almost nobody is able to take. Cisplatin is very toxic especially for kidneys. She said also that from her experience its happening sometimes that even after first run of chemo some people may be not able to take 2nd chemo session and then it is a huge problem to kill cancer competly. She said they will try to give me 6 chemo 40mg each. It would be good if I will take at least 4 sessions (160mg in total). She said 5 chemos is perfect and 6th almost nobody is able to take. It is really good that side effects were not so bad for you. My doctor said that I may have a lot of side effects but I must stay strong. She told me to prepare myself like for a war on Wendsday. She said that I should visualize my recovery and thinking that I am healthy person and cancer free. Anyway, I know what I can expect and I am aware of side effects which I hope having this knowledge will make whole process a bit easier for me. My treatment plan is 33 radiations (total 70Gy) and 6 weekly chemo 40mg. I should finish middle of September.

    Mark can you tell me, how you was feeling after the. chemo? Did you lost your hair?

    thank and best regards,

    Przemyslaw

  • PKDTV
    PKDTV Member Posts: 24 Member
    edited July 2022 #7
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    H Mark, thanks for your comment. Its really good that your side effects were not so bad for you. My doctor decided to change little bit my treatment. It will be now 33 radiations (total 70Gy) and 6 chemo Cisplatin 40mg weekly. She told me that standard treatment plan is 3 chemo Cisplatin 100mg each, but last one nobody is able to take. She said that sometimes it may happen that after first dose of chemo, some people cant take second one and then its a big problem to kill cancer completly. That is why she change it. She said if I will take at least 4 chemo it will be very good (160 mg in total) 5 chemo is great and 6 almost nobody is taking. She told me about side effects and she said that I should prepare myself on Wendsady like for a war. I should visualize my recovery, that I am healthy person and cancer free.

    Mark, can you advise how you was felling after the chemo? Did you lost your hair?

    thanks and best regards,

    Przemyslaw

  • wbcgaruss
    wbcgaruss Member Posts: 2,323 Member
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    Przemyslaw I can verify your doctor saying you are in a war, till you get your last treatment in and recover from the treatments to the point of starting to feel good again it will feel like a war you were in. You will feel that bad, although we have had people on here that tolerated the treatments well and were not hit as hard as others, hopefully, you will be one of them. But just prepare yourself for the worst and if it doesn't come to you, great!

    During my first cancer of the throat, the tumor was very large and they wanted to shrink it down before starting my treatment regimen of 35 radiation treatments with chemo beginning, middle, and at the end. So for a week at a time, I went into the hospital and had 5 days of 24-hour chemo treatment. Then a break for my blood count to come back up and another week of the same. It did shrink the tumor and they started the regular plan.

    These plans for many H&N cancers are pretty standard it seems with 6 or 7 weeks of radiation and varying doses of chemo.

    So in all as far as chemo I had Cisplatin, Taxotere, and Fluorouracil (5FU), and at least 2 of them are known to cause hair loss Taxotere, and Fluorouracil (5FU). I can tell you when it was all said and done there was not a hair left on my body anywhere. The funny part is my pubic hair went first. And post treatment it was many months till I needed to shave again, just didn't grow at all.

    I know you will do well I believe you have a good medical team and a great attitude which means a lot.

    Take care, God Bless-Russ

  • Mark_M
    Mark_M Member Posts: 13 Member
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    Hey PKDTV! I did NOT lose my hair. I was told the 2 Cisplatin doses I received were very high dosage but I didn't ask how much. I got the Cisplatin in week 1 and was supposed to get the second dose in week 4 but my white cell count was below their minimum so they had to wait until week 5.

    I was mentally prepared for the worst symptoms: extreme pain to swallow, feeding tube, etc. After reading other peoples experience, I feel a little guilty that my symptoms were so mild. The no taste symptom is no joke...it gets to you after weeks of not having a single meal that doesn't taste terrible.

    My advice: Be mentally strong, have a good sense of humor, take supplements. I've also been supplementing with green juices like SUJA and mixing in powdered greens from the health food store so that I'm getting some micro nutrition and not just calories from the high calorie drinks.

    Just know you are going to mentally OWN these treatments and the side effects are just temporary.

  • PKDTV
    PKDTV Member Posts: 24 Member
    edited July 2022 #10
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    Hi Mark and Hi Russ, 

    Thanks a lot for all your answers and posts here. You are really very helpfull. I had a phone call from my doctor and she said that we need to postpone treatment till Monday 01/08. I need to do PET on Wednesday as she said there are some question marks on my MRI. She need to be sure exactly if this tumor is touching the throat and which place. All these is needed for radioteraphy as she said there is no sense to put maximum radiation on some part of my throat where high radiation is no needed. That is why I need to have this PET and then I can start chemo & radio on Monday. To be honest I am not happy about it as I want this treatment to start as soon as possible but from the other hand I understand that doctor need to mark very precisly tumor and other places which need to be radiated. I consider myself as strong person with high level of pain, so I hope I will be able to pass this treatment similar way as you Mark. I have got couple more questions Mark if you dont mind: what is your age and what was the weight at the begining of treatment? My weight is 90kg which is going to be around 200 pounds I think. And one more question Mark, how you was feeling before you started treatment? I feel completly normal, as healthy person, the only thing I got is the lump on my neck, I have no sore throat, no difficulties in swallowing, completly nothing. I was just wondering if you had the same? 

    Best Regards,

    Przemyslaw

  • Mark_M
    Mark_M Member Posts: 13 Member
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    Hi PKDTV,

    I turned 59 just before I started the treatment. Despite my age, I worked out at the gym about 4 X per week with some local cops and I surpass most of them in my strength and cardio, thanks to genetics and strong work ethic. My age is usually guessed at late 40's early 50's. When I was diagnosed, I weighed about 205 lbs (I'm 6 foot tall) and after telling me to gain weight, got up to 210. I weigh 185 right now. I guess I'm telling you this because I've always taken care of myself and have not underlying conditions or problems with being overweight and that could be a component of my recovery.

    Just like you, if it wasn't for the lump on my neck, I would have had no idea that I had cancer at my tonsil/base of tongue location (Squamous Cell Carcinoma). Never had trouble swallowing or any other symptom besides the swollen lymph node.

  • PKDTV
    PKDTV Member Posts: 24 Member
    edited July 2022 #12
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    Hi Mark, 

    Thanks, I used to go to gym also, I was swimming, and running a lot but since I am diagnosed with cancer my world fall apart (especially at the begining) and I have stopped doing this things. Now I am mainly sitting and eating, eating and eating. I gained around 6kg already. Mentally I am quite ok now, but begining was really bad. I havent got any other health problems and I am feeling still ok at this moment. I hope I will be able to pass treatment similary to you! 

  • Mark_M
    Mark_M Member Posts: 13 Member
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    Finding out you have cancer is devastating! I was a mess, off and on, for several weeks. Good to hear your head is in the right place now. March forward and plan on winning this next round. It will be rough but get it in your head that you will persevere no matter what!!!

  • Wednesday
    Wednesday Member Posts: 22 Member
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    Hi! I had tonsil cancer in my left tonsil and lymph node just like you. Also like you, I didn't feel different (for the most part) except for a lump in my neck, which turned out to be the lymph node. I say "for the most part" because I did actually have migraines every couple of days for a few weeks before the lymph node became apparent. For me, migraines often come before illness but not as frequently as they were occurring at that time. The only time they have ever occurred at that frequency was when I was pregnant, so I was confused.

    I was 45 years old when diagnosed and went through about 5 months of total treatments. Afterwards I had a clear PET scan and have been cancer-free for almost 4 years now and plan on staying that way! So, take heart and do your best to keep a positive attitude. It is one of the highest rates of successfully treated cancers, which is something to hold onto!

    For treatment, I had a neck dissection (surgery, but it sounds like you aren't having that) and both tonsils removed. Then I had chemo and radiation. Everyone's exact treatment plan is a little different because everyone's exact situation is a little different. They look at each case and decide what is best for that individual. It sounds like your doctors are likewise tailoring your treatment to be the best fit for you and your situation.

    Regarding side effects, for me it was the side effects of the radiation that caused more difficulties, especially long term. The chemo wasn't fun either, but the combo was particularly challenging. I won't lie, it isn't pleasant but we all get through it and you will too!

    For me, the way I stayed positive was by realizing: 1. This is temporary and it will make me better; and, 2. This isn't the worst thing I've ever lived through. I know that sounds crazy, but I lived through many years of childhood abuse and having to go through what I went through as a child was worse than enduring the side-effects of treatments, no matter how difficult. Both experiences (the abuse and the cancer treatments) broke me down physically but the abuse also broke me down psychologically and was designed to harm me. The treatments were designed to harm the cancer, not me. They helped to heal my body of the sickness that invaded it. This made it worth the temporary physical suffering. It is mental suffering that is hardest to heal from. I seriously hope you were not abused and so that part of what I say does not relate to you. I say it here anyway because it is good to keep in mind that this is temporary and even if tough, will help you get better in the long run.

    For specific advice, I offer the following:

    1. Keep reminding yourself that treatments and the side effects are temporary and only physical. It will be over soon and you will be cancer free!
    2. When food starts tasting bad, I highly recommend drinking smoothies with lots of healthy, high calorie ingredients. Consult a nutritionist if you need to. Get a good blender - a Vitamix if you can afford it. It is the best money I ever spent and still use it daily to make fruit and vegetable smoothies.
    3. If you end up needing a stomach tube, don't let it make you feel bad. Some need one, some don't. No need to fight it if you need it though. It is SO much easier if you need it. I resisted because I didn't want another surgery, but I couldn't even drink water at one point because my mouth hurt so bad. Once I had the stomach tube put in, it was such a huge relief to be able to bypass my mouth! lol!
    4. Stay positive and keep reaching out on this forum. There are such good folks here. I was on frequently when I was going through everything and it was helpful to hear other's experiences.
    5. Be careful not to read posts that are negative or that don't relate directly to your experience. I was very frightened by one individual's experience and it made me more fearful than I already was. Stick to what it is relevant (people going through similar things at similar times or people who have been through this and are offering positive encouragement).
    6. I just want to say again, don't be afraid, you will get through this and be cancer-free!

    :)

  • PKDTV
    PKDTV Member Posts: 24 Member
    edited July 2022 #15
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    Hi Wednesday, 

    Thank you for your comment, thank you a lot. All you people here are so much helpful, really a BIG thank you to all of you! 

    I am really sorry to hear that you was abused when you was a child. I never had that kind of experience. My childhood was very good and I got very nice memories till present day. To be honest my life till 5 weeks ago was perfect. I have beatiful wife who loves me, we were thinking about getting pregnant shortly, about holidays and then we received this devastating news. I had a biopsy exactly on our 5th marriage anniversary. In the past I used to be active person, gym, cycling, swimming sometimes, running a lot, now I am mainly sitting at home. I have no power to do anything, I am just waiting when my treatment will start and wondering what it will bring to me. I am 41 years old and ma wife is 10 years younger, we really had perfect life before this diagnosis. I know that this cancer can be treated and I really hope it will happen. I got power to fight with it, I really consider myself as a strong person and very stubborn so I hope I will pass this treatment similary to Mark. I was thinking even when food start to taste bad I can still force myself to eat it. Yesterday I have asked wife to prepare something awfull to eat so I can see how it is and if I can force myself to eat it. I will try this in the next few days. I am afraid only that I will have "technical issues" and for this, the doctors putting this PEG tube. Really I would prefer to avoid it. I know its helpful but I just dont want to have it, I am convinced that somehow I will manage to eat. 

    Like I said in my ealier post, tomorrow I am going for PET screening which will be last thing before treatment. My doctor said that I will start chemo & radio on Monday 01st of August. I hope this treatment will lead to full cure and I hope to be cancer free. To bo honest I would do and give anything to have my life back from 5 weeks ago. 

    Take care,

  • Wednesday
    Wednesday Member Posts: 22 Member
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    I love to hear that people have great lives! That is how the world SHOULD be!!! I have every confidence that you will get that life back after this is over! I'm rooting for you!

    Don't eat yucky things now. Plenty of time for that when it comes. You won't need stamina to endure it because you will have no choice. The stomach tube was only necessary for me because I developed mouth sores that made it literally impossible to put anything in my mouth, even water. But most people don't get those sores that bad, and you probably won't either. Definitely don't worry about it now. You probably won't need it anyway.

    Spend these next few days eating all your favorite foods in massive quantities! This is a great time to eat as much as you want without worrying about gaining too much weight!

    All the best! 😊

  • Remington25
    Remington25 Member Posts: 93 Member
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    I have no doubt you will be back to a great life when this ends. I had the radical neck dissection (5.5 hours) where they removed 20+ lymph nodes, part of my tongue, one tonsil, my soft palate, etc.... Then, about 4 weeks later I started a clinical trial form of chemo/radiation. It sucked but I would do it again if I had to!

    The mouth sores were terrible for me as well. I stayed up on the medication and drank my water and very high calorie (VHC) boosts. It was HARD to swallow. Once I started swallowing I just kept chugging as long as I could physically stand the pain as I didn't want to start and stop.

    I will say that I messaged my Radio Oncologist throughout and he prescribed me a low dose fentanyl patch. It was weird because I could still feel the pain but it allowed my mind to overcome it somehow. I only used 2 patches as I was very nervous about it and I wish I would have used a 3rd patch looking back but I just didn't want to risk any type of addiction or something.

    Get a whiteboard or used to texting so you can communicate as you won't even want to attempt to talk for a period of time (could be a couple days or could be a month).

    As everyone says on here, we are here to help so please reach out and keep us up to date on your progress as we genuinely care about our fellow survivors!

  • PKDTV
    PKDTV Member Posts: 24 Member
    edited July 2022 #18
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    Thank you Wednesday and Remington, 

    I hope I will be able to pass throught this difficult time and all will be back to normal later on. As I said before, today afternoon I will have PET and tomorrow morning I am going to pass CD with PET results to my doctor. She said will take a look on it asap and hopefully on Monday I can start treatment. I will inform all of you here how I am progressing and how I am feeling. Thanks once again and have a good day all of you! 

  • wbcgaruss
    wbcgaruss Member Posts: 2,323 Member
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    Przemyslaw you will get through this and come out the other side cancer free.

    But it is not easy, but can be done and the recovery is not a fast process so be patient with yourself and your recovery.

    Wishing You the Best

    Take Care God Bless-Russ

  • PKDTV
    PKDTV Member Posts: 24 Member
    edited July 2022 #20
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    Thanks Russ. I had a PET screening and there is nothing else in my body, cancer is in the left tonsil and lymph nodes! That is good news my doctor said. Yesterday she had consultation in the hospital with other oncologists and all of them decided to change my treatment plan. I am still starting on Monday but instead of small dose 40mg cisplatin weekly, I am going to take 100mg every 3 weeks. The goal is to take three doses - first one on Monday, second on 22nd of August and last one at the end of treatment. Last one I might be not able to take, but other two is a must. I am little bit scared before Monday, but I know all will be good! Early morning I got blood tests, then radiotheraphy and after that chemo till evening. It will be long and difficult day but I will get through this.

    Thanks and best regards

  • Chillg8r
    Chillg8r Member Posts: 77 Member
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    I’m another man that has gone through what you're about to go through. You’ve gotten great advance here, I don’t really have anything to add in that way. I just wanted to let you know that 13 months out from treatment and I am feeling 90% back to normal. The only lingering issues I have are that my mouth is dry and things taste differently. Other than that I am back to all of my normal routines. It’s a very hard 2 months but, more than likely, you will look back on it as a hard chapter but one you got through. FWIW, I also resisted getting a feeding tube but gave in and ended up wishing I had gotten it sooner. Finally, be kind to your care giver, it’s VERY HARD on them both physically and psychologically. In many ways it’s harder on them than us.

    Good luck!!! NEGU!