The Colon Club

Hi All,

Today I had my 8th cycle of folfox and avastin and I had a hypersensitivity reaction to oxaliplatin just 15-20 minutes after infusion started. They had to stop chemo and I was given Benadryl and steroids. The fellow who came to see me called my oncologist who decided to only continue with Leucovorin and they connected the 5fu to come home with it. The fellow is not sure what the oncologist will do for my next cycle. Did anyone have an allergic reaction to oxaliplatin and if they did what did your oncologist do? Did they pre-medicate you with Benadryl and steroids? Or did they slow down the infusion? Or did they stop it completely? Thank you all!

Internal1 wrote:Hi AT,

I could see that most of the olymphian’s on the forum have only para-aortic node disease. In my situation, on top of para-aortic, I have lower posterior mediastinal lymph nodes that had decreased from 1.2 cm to 7 mm. Also, I have small scattered retrocrural lymph nodes. Also, I have left supraclavicular lymph nodes that went down from 9 mm to 7 mm. Maybe in my situation a surgery isn’t feasible. I’m not sure if anyone on this forum has a similar situation like me with nodes other than para-aortic which were melted by chemo and could answer this question as well. I’m glad I found this forum! I read your story and the story of others and they are truly inspirational!!

My mom has similar situation. She has mediastinal and subcarinal lymph nodes which showed FDG activity in PET scan last July. I found that all the lymph nodes except one in mediastinal and subcarinal region can be removed by Transcervical extended mediastinal lymphadenectomy (VEMLA). There is also Video-assisted mediastinoscopic lymphadenectomy (VAMLA) which removes less lymph nodes but laparoscopic. I have met with some surgeons who can do these surgeries but they did not want to operate because these techniques are for staging the cancer in chest area not for treatment. But this is ridiculous because patient gets rid of metastasized lymph nodes causing the cancer to regress. Cancer may spread to other lymph nodes in future. But who knows. It may not spread too. I am trying to find some publications that supports removing these lymph nodes not only help staging but also has long term positive effect on overall survival.

For more information:
https://pubmed.ncbi.nlm.nih.gov/17409815/
https://pubmed.ncbi.nlm.nih.gov/12895606/

Internal1 wrote:Hi All,

Today I had my 8th cycle of folfox and avastin and I had a hypersensitivity reaction to oxaliplatin just 15-20 minutes after infusion started. They had to stop chemo and I was given Benadryl and steroids. The fellow who came to see me called my oncologist who decided to only continue with Leucovorin and they connected the 5fu to come home with it. The fellow is not sure what the oncologist will do for my next cycle. Did anyone have an allergic reaction to oxaliplatin and if they did what did your oncologist do? Did they pre-medicate you with Benadryl and steroids? Or did they slow down the infusion? Or did they stop it completely? Thank you all!

Hi,

I did have a severe allergic reaction to oxi. What they did was not stopping it altogether. They gave me a break with Benadryl and steroids. Then, slow drip for the rest of the infusion. From that time onwards, they gave me steroids to take before the infusion, during and for the 3 days 5FU infusion just in case. It went well, I finished all 12 at last without any issue.

Hope it helps.

Lovelife

Achilles Torn wrote:I’m in recovery from surgery today. The PET scan just before showed the maintenance chemo had held me stable
For three months. The surgeon said it went well and they removed a lot of nodes. I was reading up on surgical options for lymph nodes and found this example of a patient with multiple lymph node surgeries who did well.


https://pubmed.ncbi.nlm.nih.gov/26640350/

Very pleased to hear that your surgery went well! I hope you’re recovering well post surgery. How did they access the nodes in multiple locations — did they make multiple incisions?

Siti wrote:

Achilles Torn wrote:I’m in recovery from surgery today. The PET scan just before showed the maintenance chemo had held me stable
For three months. The surgeon said it went well and they removed a lot of nodes. I was reading up on surgical options for lymph nodes and found this example of a patient with multiple lymph node surgeries who did well.


https://pubmed.ncbi.nlm.nih.gov/26640350/

Very pleased to hear that your surgery went well! I hope you’re recovering well post surgery. How did they access the nodes in multiple locations — did they make multiple incisions?

Hi Siti,

Was about to ask you how are you handling Teysuno? I was offered this drug some months ago after my lung VATS surgery but I was told by my second opinion it was not necessary.

I was starting a new job then so I didn't take it. How does it work out for you?

Lovelife

lovelife789 wrote:Hi Siti,

Was about to ask you how are you handling Teysuno? I was offered this drug some months ago after my lung VATS surgery but I was told by my second opinion it was not necessary.

I was starting a new job then so I didn't take it. How does it work out for you?

Lovelife

My husband suffered from bad HFS and it was really affecting his daily life so his oncologist switched to TS-1. It has only been a few cycles so I don’t really know how effectively it would be long term (my husband’s CT scan results will be out this Friday) but in terms of side effects it’s a lot more tolerable compared to Cap. He can finally feel his hands and feet again, but do suffer from occasional diarrhoea which he manages with loperamide + psyllium husk.

I hope this information is useful.

Siti wrote:

Achilles Torn wrote:I’m in recovery from surgery today. The PET scan just before showed the maintenance chemo had held me stable
For three months. The surgeon said it went well and they removed a lot of nodes. I was reading up on surgical options for lymph nodes and found this example of a patient with multiple lymph node surgeries who did well.


https://pubmed.ncbi.nlm.nih.gov/26640350/

Very pleased to hear that your surgery went well! I hope you’re recovering well post surgery. How did they access the nodes in multiple locations — did they make multiple incisions?

It was one big incision in my case as they were the whole chain from Para-aortic to Illiac. The paper I linked to was about a patient with multiple different sites. Just to show it was possible.

Recovery has been tough but I’m getting back on my feet. Time will tell if this leads to a survival benefit for me. But I’m optimistic.

AT

Hi Msusta,

I completely agree with you and apparently there are different schools of thought when it comes to lymph node removal. Some believe that it increases survival benefit while others do not. My surgeon believes that there is a survival benefit and mentioned that if the chemo works and there are only a few lymph nodes in a certain place then it might be possible to remove them to increase survival benefit. Thank you so much for sending the links!

I found this article that shows there is a benefit to extended lymphadenectomy for isolated extra regional lymph nodes metastasis. It is also a relatively recent article. There doesn’t seem to be a lot of research on this and perhaps this is the reason for the different approaches by doctors regarding lymphadenectomy.

https://doi.org/10.1016/j.asjsur.2015.10.003

lovelife789 wrote:

Internal1 wrote:Hi All,

Today I had my 8th cycle of folfox and avastin and I had a hypersensitivity reaction to oxaliplatin just 15-20 minutes after infusion started. They had to stop chemo and I was given Benadryl and steroids. The fellow who came to see me called my oncologist who decided to only continue with Leucovorin and they connected the 5fu to come home with it. The fellow is not sure what the oncologist will do for my next cycle. Did anyone have an allergic reaction to oxaliplatin and if they did what did your oncologist do? Did they pre-medicate you with Benadryl and steroids? Or did they slow down the infusion? Or did they stop it completely? Thank you all!

Hi,

I did have a severe allergic reaction to oxi. What they did was not stopping it altogether. They gave me a break with Benadryl and steroids. Then, slow drip for the rest of the infusion. From that time onwards, they gave me steroids to take before the infusion, during and for the 3 days 5FU infusion just in case. It went well, I finished all 12 at last without any issue.

Hope it helps.

Lovelife

I’m still waiting to see what my oncologist will do for my 9th cycle. I haven’t heard back from him, but I definitely want to continue with oxaliplaton because it looks like the regimen is working. Pre-medicating might work and I’m willing to do that, so hopefully he’ll agree to this!

Hi AT, so very happy it all went well! You are an inspiration to others for being your own advocate! I hope you feel better and better than the day before during recovery.

Update: Pathology for the removed tissue and nodes showed more extensive spread than was shown on the PET scans. Cancer was still confined to lymph nodes but some para-aortic nodes were matted together and there were signs of extension beyond the node in the tissue. I had a follow up PET scan last week (6 weeks post surgery) which showed some low uptake just below the surgical site. This was inconclusive as it could be inflammation from the surgery. I am feeling good now and scheduled to go back on chemotherapy next week. Overall I am glad I pushed for the surgery and although the recovery was tougher than I anticipated I was lucky I've had no major complications. I remain hopeful.

Cheers
AT