Handeling first chemo treatment side effects

Hi and welcome to the Community but always sorry to see folks finding us, but this is a safe and supportive place.

I am Mike Thehighlander and I help out around our Lymphoma groups. So I had NHL and a different treatment journey but I can identify with your initial first experiences.

Always tell your team if you are having stomach issues as they can help with this.

Muscle aches and pains can be part of the treatment side effects. The chemo does effect muscle tone but this will come and go.

It is important to keep some exercise going as this helps the build up of fatigue.

The taste is a hard one but for me it was fresh (not tinned) pineapple....... it helped take that horrible taste away and in doing this was able to keep eating. Eating strong flavours can help and when I could I would have spicy food.

It is very important that you drink lots of water as this helps flush all the takins from your kidneys.

Does it go away?...... for me, I think I just got used to most of the issues and just kept focused on the end goal in all this.

Here are some bed time reading 

Nausea

Fatigue

Avoiding Infections

Eating and Neutropenia

Peripheral Neuropathy

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

I am sure that some of the HL folks will pick up on your post, keep posting as it does help you walk the journey.

Hi, I was diagnosed with stage 2 classical hodgkin's in September 17. Now in remmision a year and half. I just wanted to message to see how you was getting on the with jaw pain? For me this was one of the worst side effects of treatment, and nobody had seen to of heard of it? It was a sharp tingling sensation at the back of my jaw and on my tongue. I searched everywhere to find some information and found nothing...I think I recall being given medication called pregabalin which is a nerve medication. If it is still persistent, maybe ask your consultant.

Hope all is well.

Hi Clark95, happy to hear you're well.

Yes, I've had the exact same thing, like being stabbed with a million needles. I took Oxicontin and medical Marijuana, and that didn't help.

The jaw pain is a side effect of the vinblastine. I was diagnosed with hodgkin's stage 2b, and took the full dosage the first cycle - the first two treatments. Got the jaw pain full on both times.

My doctors took me off it for a cycle, then reintroduced it, first 50% than 75%. It only ached a little bit when I chewed, and went away after a couple of days, so I guess I'll take the full dosage next time.

Don't think I've heard of pregabalin, so thanks, I'll ask!

Have you had any modifications to your treatment? 

It was exactly the same thing! Now you mention it when I had reduced vinblatine it was still there but not a prominent. The more research I did, it led me to belive that it was linked with a nerve in the back of your jaw, whether this was true or not I dont know. If your anything like me, you have researched everything you can about the side effects. It's not nice, as you will know but you wont believe how quick your last cycle comes. The only change to my treatment was dropping the belomycin after the second cycle and a couple of reduced chemos due to being slightly ill with a cold. 

How are you finding treatment as a whole?

Hi,

do talk to your team about that jaw ache, it wasn’t something daughter talked about, but I’m sure it can be helped. 
like Mike, I too would suggest fresh pineapple for taste problems, it’s been noted with other chemo regimes too and really can help with that metallic taste. 
hugs xxx

Oh yes fresh pineapple all the way but my wife hatted having to cut it up

Yeah, I found a couple of studies where people took vinblastine or other related medications and got jaw ache after 3 days, so I basically told my doctor what was happening instead of them telling me haha. They also didn't really hear about that symptom, said it was very rare. 

I don't know if they'll drop the belomycin, since I've not taken the full amount of vinblastine, there aren't any studies about people dropping the v, only the b or d... Not that I found at least.

Generally I'm doing ok really, apart from the annoying taste in my mouth all the time. In the begining it was very sweet, but now it's more chemical and I want to be sick because of it. It's really bad especially when I'm getting anything fed though the IV, even when it's just water. I have to constantly eat or chew gum when Getting treatment. 

Have you had that? What helped if you did? 

Hello. Just joining the conversation. I am on my 6th out of 8 ABVD and only recently have noticed the jaw pain, on one side only!

I, too, hate the weird chemical taste, and this makes water really difficult to drink- right at the time you really need it! I also experience a horrible saliva build up in my mouth, during and a few days after chemo, which I think may be an anticipatory nausea thing. None of the nurses have heard of it.

Overall I have found that eating strong flavours frequently helps get me through- though chewing gum during chemo sounds like a great idea (I tend not to want food then). I have zero appetite but flavourful food has been my saviour. I usually find that in the second week everything settles down and my mouth/taste becomes normal-ish again. 

All best with the rest of your treatment.

Hi,

that metallic chemical taste can often be helped with pineapple (fresh, not tinned) best cut up and chilled, even frozen if your teeth can stand it!

strong flavours help too, daughter got far more into curries during her chemo time. 

hope you find something to help 

hugs xxx