Proximal Tibial Replacement

sorry to hear you had a bad experience, it sounds like a nightmare! I decided to go ahead with the chemo. The PICC line was a nightmare for me, so I’m dreading the actual treatment now. Currently waiting to be called for my turn. 

So are you saying that after 3 cycles they scanned you and saw that the chemo didn’t make a huge difference? Did the chemo get rid of the metases in your lungs? How often do they scan you now to check for any growth? 

and lastly, do you feel back to normal now that you no longer are taking any treatment? In terms of your quality of life, did the chemo leave any long term side effects for you?  Sorry for all of the questions! It’s rare to find someone with my condition as osteosarcoma is not very common. 

I think for me If  the chemo Doesn’t work then I’ll try alternative methods. Let me know if any work for you! 

Also I forgot to mention that they will only be giving me doxorubicin and cisplatin. They were originally going to give methotrexate but decided not to in order to limit the hospital visits due to the virus. 

It’s good that you decided to go ahead. It may work for you, you’re giving it a chance. It’s a difficult time but I’m sure you’ll be extra careful not to go near anyone or go anywhere. Have no expectations, some people are absolutely fine with it. 

I absolutely hated having the Hickman line put in. I didn’t say that before because I didn’t want to scare you for the pic line. 
My cancer was stage 3 so I didn’t have any in my lungs. I have xrays every 3 minutes to check my leg and lungs. I’m only 6 months post op. 

I had 10 weeks of chemo pre op and then they tested the tumour once it was removed. I saw the lump growing though while I was having chemo, it didn’t surprise me when they said it hadn’t worked. 

After chemo it took a while to get over the tiredness. The nausea went pretty quickly. I have a bit of tinnitus and tingling in my fingers and my periods haven’t come back.  my hair is growing back well although it’s a completely different colour and texture. I wouldn’t say that I have full quality of life back because I’m very very tired. I went back to work recently and struggled (but I did need further surgery in January for an infection so that has contributed). I think that the fact that my leg doesn’t really work well and I find walking difficult is the biggest problem I have. I hate not being able to run and play sports. I basically shuffle around now. 

can you walk ok? What kind of surgery did you have? 
please let me know how you get on with the chemo. 

I tried to talk about alternative treatments but I can’t post that on here. 
there are some out there! 

Hi Hattykat,

oh gosh don’t get me started on the PICC line! What should have been a straight forward procedure of 30 mins, turned into more than an hour because they couldn’t find an appropriate vein. My veins at the top of my arm are really small and kept shrinking. When they put it in I could feel the prodding even with the local, was so painful so they had to give me another shot of local I was literally in tears, I have a very low pain tolerance. Even the nurses were saying it’s not common for that to happen, had to be me, someone who HATES pain and needles! How did yours go? 

so I’m now a couple hours into my chemo and so far feeling ok apart from needing to pee every 10 mins! I also can’t sleep at all despite having such a long day and feeling tired. It’s now 3.30am and I just cannot sleep at all. Slept for an hour and now I’m wide awake. I don’t know if it’s nerves or the drugs. To make matters worse I started my period today, typical for it to start on first day of treatment. Same thing happened with my surgery! I’m having doxorubicin and cisplatin over the three days. How long did it take for you fully feel the side effects After ur first cycle ? Was it immediately or after a few hours or next day? 

as for your raised temperature, was this towards day 10? I assume it can happen any time and it seems to be quite common. It’s quite worrying for it to happen during now though. My thermometer broke so waiting for a new one. 

how have the scans been since you’ve had the tumour removed? Have you been given the all clear and now taking 0 meds from the doctor? I wish I got mine checked way earlier on so that it wouldn’t have spread so quickly :( when was your last chemo session? (Sorry for all the questions!) 

Wow you went back to work in jan! You are an absolute soldier! I’d say take it easy and don’t rush. Your health is more important and your work should be understanding of that and not pressure you. I’m wondering how chemo will affect me and if I can also start gradually working from home in the near future. But they do say the more cycles you have, the more tired you get.  

as for your leg, did you have a metal prosthetic inserted inside? And what is your mobility like now? 

I had a femural distal knee replacement where they removed 16cm of bone. My tumour was massive it was 11cm and high grade all throughout. No wonder I was struggling to walk. it’s been a month since my operation and I’ve now come off the crutches. I can walk without them but My balance isn’t 100%. I also walk quite slow and can’t operate my knee fully yet. E.g I am unable to bend it all the way, just about 50 degrees. Only recently have been able to lift it slightly on its own. it does get really frustrating because I’m like you, I want to be able to run and be active. I see people running and walking normally past me on the street and it makes you realise how much we took even walking normally for granted! 

as for the herbal meds, I also wasn’t allowed to post abojt it properly lol so maybe leave that one out. 

look forward to your response! Xxx

Hiya,

im glad you’re feeling ok so far. It sounds like you’re having the same chemo I had. I think day 3 it started to hit me and the first weekend and following week was a bit rough. My first round wasn’t too bad. The second was far worse. Just sleep when ever you can. Doze through the day if you need to. I didn’t get a raised temp on the first round, it was the second one on about day 10. 
My last chemo was in August. Where are you having chemo? 

i had a Hickman line in which how’s into the chest. They said it would be fine, it would just feel a bit weird. It was hideous, it hurt, I could feel everything and when the tube went down to my heart I thought I was actually having a heart attack. I hated it the whole time it was in but I suppose it saved my veins. I had pic line I’m in January but I was under anaesthetic when it went in. Taking that out was no problem at all. 

im impressed that you’re walking without a crutch. I don’t really know the name if my surgery (proximal tibia something) but I had about 2 thirds of my tibia removed and my knee. I have metal plate to replace the tibia and a metal knee. 
i can walk with out a crutch in the house but it’s like throwing myself from side to side but I walk ok with 1 crutch. I can’t walk far though. The nerves to my foot haven’t recovered properly so I haven’t got full use of it, or sensation. My balance is horrendous! My physio is going well and I’m getting stronger all the time. I’ve had to really lower my expectations of what I’ll be able to do realistically. It’s really got me down. I used to love running and walking. If I were younger I’d have an amputation and get a running blade!!! I also wished I’d gone to the doctor sooner. I don’t know why I thought it was ok not to be able to walk properly!! 

my Scans so far are all clear. I’m still in the danger zone. If it comes back it’s highest risk is in the first 2 years. Im scared. im a single parent, have been for 13 years and the thought of this killing me and of leaving my daughter is just to hard to bear. I pray constantly that I’ll be given enough time to see her through school and out into the big world. 

I’m still on huge amounts of painkillers for the nerve pain. I try to come off them but the pain is too much. 

i hope all the nurses are lovely and you’re being looked after well. Have you got family support? 

x 

I forgot to give you some advice re chemo. 
Don’t eat your favourite foods on chemo!! Some of it you may never want to eat again! 
I gave up coffee, chocolate and curry while I was having treatment. I’m glad because I still really enjoy them. Other foods I ate on treatment I still can’t even think about. 

• Hi i have recently joined this group as my husband has osetosarcoma similar to yourself stage 4 and high grade, we are very worried about covid also the chemo etc i am glad you pointed out the chemo only has a 20% chance of working. He was diagnosed beginning of March this year he has had 3 sessions so far and he has deteriorated so much he has had 1 session of cistoplatin and doxyrubin and 2 sessions of methotrexate his tumour in his leg has grown so now the surgeon has decided to do an op to remove the tumour and replace the tibia and knee, he also said chemotherapy hasn’t done any good for you as my husband has been really sick and generally unwell so they will look at radiotherapy after the operation. My husband has decided he doesn’t want chemotherapy at all now. Its all so confusing and very stressful. Any advice would be welcome especially on coping mechanisms physiologically especially. Thank you

Hi,

I’m so sorry to hear that you’re going through such a terrible time. It turns your world completely upside down doesn’t it?! I was diagnosed a year ago, it’s a long journey. 

the chemo is harsh. I had the same ones but 6 sets. The effects do wear off though and he will feel well again. I think it’s hard to see someone going through it, it was harder for my family to watch me suffering from it. I was very much out of it I think! 

mine was stage 3 not stage 4 thankfully. I had a tibia and knee replacement just like your husband. It’s a big op and takes some recovery. I’m still struggling with mobility due to nerve damage but it is getting easier. 

I’m not sure what I can advise as to how cope psychologically. I think it’s different for the person having the treatment than the family around. I coped better during treatment when all my family struggled and now I’m not coping mentally at all. There are specialist charities that offer counselling for cancer sufferers and their families. It depends where you are but in sheffield where I am there’s a fab place that offers support and counselling. There’s a huge amount of unknowns aren’t there and it’s a situation that we can’t control. We can’t take control of the treatment, the outcome or anything. Planning ahead is impossible. I just talk to anyone who will listen now. I tell them my fears, my worries and how I’m still struggling physically and emotionally. I felt that society wanted me to be brave and positive and the more people told me how brave and strong I was, the more pressure I felt  to hide how I really felt. Now I just let it all out. I call my sister in the middle of the night when I can’t breathe because I get so scared when at first I tried to ride the storm on my own. I have made  a support network to help me through. Don’t try to do it alone, it’s too difficult. Just talk!